Medicare Coverage Database
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Content Section
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Public Comments
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| Commenter: |
Cotter, Dennis
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| Title: |
President |
| Organization: |
Medical Technology and Practice Patterns Institute |
| Date: |
8/5/2008 2:21:47 PM |
| Comment: |
Dear Sir: I am writing to introduce you to MTPPI a 501(c)3 non-profit institute established in 1986. Among other treatments, we are interested in studying the causal relationship between the therapeutic intervention epoetin in treatment of chronic anemia among dialysis patients. This could possibly be one of the most complete stories that will ever be told about the "clinical benefit" of a therapeutic intervention described in the following:
The effect of epoetin dose on hematocrit. Kidney Int. 2008 Feb;73(3):347-53.
Dialysis facility ownership and epoetin dosing in patients receiving hemodialysis. JAMA. 2007 Apr 18; 297(15):1667-74.
Translating epoetin research into practice: the role of government and the use of scientific evidence. Health Aff (Millwood). 2006 Sep-Oct;25 (5):1249-59.
Factors influencing route of administration for epoetin treatment among hemodialysis patients in the United States. Am J Kidney Dis. 2006 Jul;48 (1):77-87.
Hematocrit was not validated as a surrogate end point for survival among epoetin-treated hemodialysis patients. J Clin Epidemiol. 2004 Oct;57(10):1086-95.
Epoetin requirements predict mortality in hemodialysis patients. Am J Kidney Dis. 2004 Nov;44(5):866-76.
Challenges in establishing a clinically and scientifically robust Epoetin policy. Clin Nephrol. 2004 Jul;62(1):69-70.
We also have an epoetin safety paper in the works addressing the relationship between mortality and high dose levels of this drug. If you are interested in receiving any of these papers and/or hearing more about this topic, let me know. If you know of groups interested in this topic, I'd be happy to talk with them about the implications of our research.
Sincerely,
Dennis J. Cotter President Medical Technology and Practice Patterns Institute, Inc. 4733 Bethesda Ave., Suite 510 Bethesda, MD 20814 (301) 652-4005 fax: (301) 652-8335 dcott@mtppi.org |
| Commenter: |
Thompson, Mark
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| Organization: |
Florida Radiation Oncology Group |
| Date: |
8/8/2008 10:32:44 AM |
| Comment: |
PROTON THERAPY....There is very limited use in cancer therapy for this expensive technology. The reults in treating prostate cancer are no better than using IMRT or prostate brachytherapy which cost a fraction of PROTON therapy. All of these centers going up in the USA is madness. Until their is data to support superior results which their is not protons for prostate cancer should not be funded. Dr. Mark Thompson |
| Commenter: |
Carpenter, Larry
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| Title: |
Associate Professor |
| Organization: |
Baylor College of Medicine |
| Date: |
8/8/2008 2:20:45 PM |
| Comment: |
I am very concerned about the current rapid proliferation of proton beam radiation without sufficient evidence supporting its clinical superiority over current modalities. I have heard that MD Anderson Cancer Center is refusing to conduct randomized trials for prostate cancer comparing protons to conventional IMRT. In addition, MD Anderson uses less image guidance (IGRT) than most academic centers for prostate cancer treatment. They obtain KV imaging of the bones, but the prostate moves independently from the bones. Therefore, they may even have less accuracy in their prostate treatment than many other centers. In addition, MD Anderson uses only 2 lateral beams to treat the prostate. The penumbra for proton beam is equal or greater to that of photons beams. Therefore, since rectum and bladder may be in the penumbra we would not expect the complication rate of protons to be less than that of conventional photons. Dosimetric studies have shown that the conformality of protons is not better than current therapy with IMRT, especially since IMPT (intensity modulated proton therapy) is not generally available. Marketing of protons includes overly optimistic statements about possible safety of protons. This aggressive advertising is necessary due to the enormous capital investment of proton centers. The unsuspecting patient will feel enormous financial pressure to find money to pay for proton therapy thinking that they have found additional safety (certainly not proven). Finally, the current charges for proton therapy, around $200,000 per patient, would be very damaging to our health care system if allowed to become more widespread. |
| Commenter: |
Johnson, Douglas
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| Title: |
Radiation Oncologist/Director of Clinical Research |
| Organization: |
Baptist Cancer Institute |
| Date: |
8/8/2008 5:07:03 PM |
| Comment: |
CORRECTED: Proton therapy for prostate cancer should not be a covered service, as superior radiation treatment alternatives already exist, are proven, and can be delivered at a fraction of the cost. Proton therapy is not new: Facilities have been used to treat cancer patients since the 1950''s. Almost all the proton centers in the USA closed by the early 1990''s because there was NOT ONE clinical situation in which protons had been demonstrated to be superior to other radiation modalities. Now a new company has come on board with a better, more reliable proton-generating machine, but the fact remains that there is no proven benefit to protons over photons (x-rays)- both are low LET (linear energy transfer) radiations whose biological effectiveness is nearly identical. The sole potential benefit of protons, rather, relates to protection of nearby normal tissues. This used to be a concern with older photon (x-ray) techniques, but no longer: Modern IMRT or IGRT photon techniques also protect normal tissues greatly. Finally, the ONLY published data on the use of protons for prostate cancer comes from Loma Linda: Their long-term local control rate was only 77%, compared to better than 90% published with modern x-ray techniques that include brachytherapy (seeds) as a portion of treatment. In addition, the complication rates between protons and modern x- ray techniques are virtually identical. Using protons for prostate cancer is akin to firing up an Edsel to compete against a modern Toyota: The Edsel may look pretty, but is too expensive to run and is an antique from a bygone era addressing problems which don't exist. You can find better places to spend my money than on proton therapy for prostate cancer. I am a radiation oncologist with 28 years experience treating prostate cancer. I know. |
| Commenter: |
Cesaretti, Jamie
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| Title: |
Assistant Professor of Radiation Oncology |
| Organization: |
Mount Sinai School of Medicine |
| Date: |
8/10/2008 1:39:22 PM |
| Comment: |
I would like to comment on the reimbursement of proton therapy for prostate cancer. I was optimistic at first, as a young academic radiation oncologist, that the future of prostate cancer treatment would include proton therapy until I read with interest an article published in the International Journal of Radiation Oncology Biology and Physics by Eric Hall, D.PHIL., D.SC in 2006 entitled, “INTENSITY- MODULATED RADIATION THERAPY, PROTONS, AND THE RISK OF SECOND CANCERS.” I have sent the article as an attachment though the most impressive aspects I will quote as follows; in addition, please note figures 9 and 10 from the article Int. J. Radiation Oncology Biol. Phys., Vol. 65, No. 1, pp. 1–7, 2006. I quote page 6 paragraph 2,”the pencil beam of protons that emerges from the cyclotron or synchrotron is made simply to impinge on a scatter foil to produce a field of useful size. However, the scattering foil becomes a source of neutrons, which results in a total body dose to the patient. The consequences of this exposure are shown dramatically in Fig. 10. Passive modulation results in doses distance from the field edge that are 10 times higher than those characteristic of IMRT with X-rays.” Dr. Hall wrote the text that all radiation oncologists have used for the past 40 years to learn the science of radiobiology (Radiobiology for the Radiologist) and looms as probably the single most influential voice in the field of radiobiology. In addition, I do not think that the patients are told at these centers prior to their prostate cancer treatment that they will have to be bathed in neutron contamination in order to achieve what is a possible physical advantage without concurring clinical evidence over photon based radiation techniques. Following this, I began to see many patients with prostate cancer in my practice that followed the numerous internet links available to them begin to quote to me that “proton therapy is more precise!” I explored these insights with them and they usually answered that their information came from www.proton-therapy.org (the website of the National Association of Proton Therapy), www.protons.com (the website of the proton therapy and research center at Loma Linda) or www.floridaproton.org (the website for the Florida Proton therapy Institute in Jacksonville). I can only quote their clinical results from their press releases because other than numerous articles on dosimetric quality and prostate cancer treatment very little has been published about clinical outcomes. I refer you to the pubmed/medline website http://www.ncbi.nlm.nih.gov/sites/entrez search terms proton therapy prostate cancer on 8/10/2008. An example of such a press release from Dr. Slater (the chairman at Loma Linda) on the www.proton-therapy.org website is representative of the lack of peer reviewed justifications to reimburse more for proton radiotherapy than for “standard” radiotherapy, (“Unlike conventional radiation,” says Dr. Jerry Slater, Clinical Director of Loma Linda's Proton Therapy Center, “proton radiation has a well- defined high-dose area which can be manipulated to precisely surround an irregularly shaped target such as the prostate gland. This inherent characteristic of protons allows very little scatter to the bladder and rectal areas, higher doses to the prostate, and significantly less side effects.” ) He also states that, (Dr. Slater noted: "Our analysis shows that overall, the disease-free survival rate is running above 90 percent at four years and the side effects are considerably less than we would have expected." Currently, some 80 patients are treated each day at the Proton Center, with about half receiving prostate cancer treatment. Patients come to the center from all across the U.S., as well as from numerous foreign countries.) Clearly, the press releases from these institutions are causing individuals to make the trip to their center, which in the culture of capitalism is the reward for a successful marketing campaign. However, as a public funder the public interest should be the first consideration. High quality trials should be undertaken to prove that proton therapy is worthwhile at all; disease free survival rates of greater than 90% at 4 years are common among successful prostate cancer treatments (often at endpoints of 5 to 10 years). The problem with such a quote is that in order to publish such a result in a scientific journal and to have it be little more than hearsay one needs to have at least 2 years minimum follow-up on every patient in addition the definition of disease free survival should be stated and the patients who are being “generalized” about should be risk stratified according to an evidence based guideline such as that of the National Comprehensive Cancer Network, www.nccn.org.
I think innovation should be rewarded but proton therapy is not innovative, it has been around in clinical use for 18 years at Loma Linda and much longer at the Massachusetts General Hospital. To their credit a randomized trial was undertake between 1996 and 1999 of a proton therapy boost for prostate cancer and published in JAMA in 2005 (JAMA. 2005 Sep 14;294(10):1233-9). Of note, from the article, “Only 1% of patients receiving conventional-dose and 2% receiving high-dose radiation experienced acute urinary or rectal morbidity of Radiation Therapy Oncology Group (RTOG) grade 3 or greater. So far, only 2% and 1%, respectively, have experienced late morbidity of RTOG grade 3 or greater.” No statistical difference was seen in late or early toxicity with this mixed photon and proton approach, with over 71% and 63% of the dose given with PHOTONS in the 70.2 and 79.2 Gy arms respectively. With the majority of dose given in this trial with photons to manifest only a 1 or 2% toxicity rate in both the acute and late setting means that the advantage of a purely PROTON approach can, by definition, only be on the order of 1 or 2%! The current high public funder reimbursement for proton therapy for prostate cancer is inspiring the building of many facilities in the US (see www.proton-therapy.org ), in addition to funding an effective direct to medical consumer marketing campaign which, as delineated above, has little basis in clinical evidence.
As a young radiation oncologist, I think that it is important that the foundations of innovation for my field be more solid than claims of “more precise” and “less side-effects” in the form of press releases. Such claims should be proven in a phase III setting before continuing what has become a marketing nightmare for my patients and their families.
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| Commenter: |
harkaway, paul
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| Date: |
8/12/2008 6:03:39 AM |
| Comment: |
As I witness the profound impact that our current economic struggles are having on our communities and my patients, the seemingly profligate spending going on in the health care community befuddles me. A recent summary of major building projects in Southeastern Michigan published in a business periodical showed that many of the projects and some of the largest were in the healthcare systems. It gives the appearance of a “matrix-like” parallel reality going on in health care. Our citizens are loosing their jobs and homes. Many patients lack access to basic care. Many patients seem to be dropping healthcare coverage outright, and those who still have it have an increasing financial burden that they struggle to meet. I am seeing more and more patients who cant seem to afford needed medications including seniors covered by part D (many of whom have fallen into the dreaded “donut hole.”) There is an increasing disparity in health care between the “haves and have nots.” In the midst of all of this, the large health care systems seem to have ready access to capital for large projects. I realize that funding for these comes through a different pathway but ultimately the patients, the rest of our citizens, and all of the employers in Michigan have to foot the bill. When will that burden crush them? Has it already?
I do not know why the Health Care System (or non system as it were) has not collapsed yet, but most of us feel that this cannot go on forever and yearn for meaningful reform. For insights into why the system is still able to function, I would refer you to a recent publication in the New England Journal of Medicine: The Amazing Noncollapsing U.S. Health Care System – Is Reform Really at Hand? http://content.nejm.org/cgi/reprint/358/4/325.pdf
I assure you that the “System’s” perseverance is not because of clever design or exceptional performance. If its longevity were based on those factors alone, it would have vanished long ago.
I am not an expert on proton beam therapy, and I am not pretending to be one, but as you ponder this decision, I would suggest the following for your consideration:
· What is the strength of the evidence supporting this modality over others or over “no treatment?” · How will those who propose to provide the treatment assure that it is available to all citizens who might benefit? · How will those who propose to provide the treatment prevent “indication creep,” such that it does not end up being used where it has marginal or no proven benefit and only adds cost? If it is true that a half of the health care dollars spent on an individual are spent in the last 6 months of life, how will we protect against this being yet another modality to add in to that equation? (http://www.ahc.umn.edu/img/assets/25857/end_of_li fe.pdf · How will those who propose to provide the treatment avoid offering it under the guise of hope? How will they control the “hype” and avoid creating demand based on false hope? (As a parenthetical, I would offer to you that most health care advertising seems to fall squarely in the category of “hype.”) How will we keep this modality from becoming another example of what Ian Morrison characterizes as “expensive technology excessively and aggressively applied to the affluent and well insured.” · How many of these machines are needed in this country? How many do other industrialized countries have? As a side note, how does our country compare to those other countries when we compare the performance of the respective health care systems? · If the indications are limited and circumscribed, would it make more sense for patients to travel to other states who have already installed the modality rather than duplicating it in Michigan? Is Bloomington Indiana, Chicago Illinois, or Pittsburg Pennsylvania too far to ask patients to travel for such specialized treatment? These areas either have or will soon have this capability. · Who are the investors in this initiative? How do they intend to re-coup their investment? How much usage beyond areas of clearly defined benefit would it require for them to do so? · Is it not true that this effort by definition will have to compete for resources against other pressing healthcare system needs such as electronic communication and care tools oriented towards chronic disease, or preventative health tools and efforts? See Woolf SH, Johnson RE. The Break-Even Point: When Medical Advances Are Less Important Than Improving the Fidelity With Which They Are Delivered Ann Fam Med 2005;3:545-552. http://www.hvpa.com/Physician/education/woolfandjo hnson_article_break_even.pdf
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| Commenter: |
kluck, bryan
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| Title: |
interventional cardiologist |
| Organization: |
heart care group |
| Date: |
8/12/2008 7:20:41 AM |
| Comment: |
There can be no reasonable, non political way to justify the continued non coverage of this proceedure in the sub-population of asymptomatic patients at high risk for carotid endarterectomy. The body of literature supporting the coverage of asx. high risk CAS is huge, and of course there is no way to compare real world patients who are forced, cajoled or otherwise convinced to CEA, as there is no similar restriction on the surgical world(not even to inform them honestly about an equivalent or superior alternative). How many non endovascular surgeons are giving patients at high risk for CEA an alternative as part of informed consent?
I had the illusion that perhaps CMS had a altruistic, broader view that if they just put the brakes on for a short time, the furor would settle and perhaps even the motivated surgeons would catch on and acquire the skill set to perform the endovascular approach. That illusion would be unsupportable should this non expansion of coverage be upheld.Sufficient time has passed, and the mix of performing physicians has stablized. The only remaining logical conclusion is that the inevitable backroom politics associated with a controversial new proceedure has prevailed over the interests of medicare recipients.
I WOULD support a strong arm tactic on CMS's part to "suggest" to industry that they find a way to make this proven proceedure more cost effective, but NOT to continue the non coverage policy.
This non cverage policy puts patients in the middle of a debate between groups of physicians. That debate was carried out at the FDA level when this proceedure was approved for this group of patients. Continued non coverage is unsupportable, inexcusable and an embarassment to a body supposedly committed to providing care for its recipients. I continue to hope that wisdom will prevail here, but I must admit, my hope is fading. I think the CMS has asked the endovascular community in this country to "retrieve the witch's broom ". The community has responded by laying a stack of legitimate brooms at the wizzard's feet. Lets get this overwith. Approve it and let us ge on with the real mission -providing our patents with appropriate care, whichever techniqe happens to be best. |
| Commenter: |
Weed, Dan
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| Date: |
8/13/2008 8:55:16 AM |
| Comment: |
Proton Therapy for Prostate Cancer.
I'm a radiation oncologist. Protons offer a significant benefit in several oncologic situations. Prostate cancer is not one of those situations.
Unfortunately, however, I do believe prostate cancer treatment with protons significantly offsets the lack of reimbursement in the other clinical situations where protons are needed but not reimbursed. |
| Commenter: |
Augspurger, Mark
|
| Title: |
MD |
| Organization: |
Florida Radiation Oncology Group |
| Date: |
8/21/2008 12:17:57 PM |
| Comment: |
Proton Therapy for Prostate Cancer:
Proton therapy should not be used in the treatment of prostate cancer. Proton treatments are much more expensive than other radiation techniques. There is no proven benefit in tumor control or side effect profile to proton therapy over IMRT or brachytherapy. In fact, the opposite may be true: one article in JAMA showed that when protons were compared to seed implants the rate of Grade 2 rectal toxicity was twice as high. Other data indicate that protons may be associated with inferior biochemical (PSA) control when compared to brachytherapy. Finally, due to neutron contamination, protons may have a higher rate of secondary cancer development in the years to come. |
| Commenter: |
Holman, Paul
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| Date: |
9/2/2008 2:27:52 PM |
| Comment: |
[PHI Redacted] One difference between proton treatment and others is that you
leave feeling human and normal. That's worth everything.
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| Commenter: |
Richards, Mark
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| Date: |
9/2/2008 2:33:35 PM |
| Comment: |
Proton Beam Radiation Treatment for Cancer - Medicare Coverage:
As a health care professional, scientist [PHI Redacted] I feel strongly that Medicare should cover this state-of-the-art treatment. [PHI Redacted] 6 year cure from prostate cancer with zero side effects during treatment and since treatment. This can not be said of any other treatment option available for treatment of prostate cancer. I have read all the scientific literature and compared the results with all other treatment modalities. This treatment should be available to Medicare patients.
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| Commenter: |
whitt, william
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| Title: |
none |
| Organization: |
noww |
| Date: |
9/2/2008 2:34:44 PM |
| Comment: |
it works great and you can have all of your plumming afterwards ,,,, [PHI Redacted],,, It works dont be fooled .... and their no pain doing it ....
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| Commenter: |
Greening, Gayla
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| Date: |
9/2/2008 2:40:42 PM |
| Comment: |
Before proton therapy is denied as a viable treatment for prostate cancer, there are many not doing enough research!!! Please make sure you do an extensive study re: the after-effects of the various treatment options before dismissing protons. It is the ONLY option for those that actually do their research! Perhaps incontinence and impotence are not important issues for some men, but they certainly have proved VERY relevant to those who lose those functions with other treatments! The ability of the protons to be directed ONLY at the diseased tissue makes all the difference.
It would be wrong to disallow proton therapy as a viable option for insurance coverage. If you do your research, you will find it is, by far, the best option... if you're interested in maintaining quality of life post-treatment! |
| Commenter: |
Thurber, Marshall
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| Title: |
Attorney |
| Date: |
9/2/2008 2:45:02 PM |
| Comment: |
[PHI Redacted]
[PHI Redacted] no side effects and no surgery; it would be a crime not to continue to have this covered under medicare. [PHI Redacted] Why make men suffer with less than this type of treatment?
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| Commenter: |
Davis, Michael
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| Date: |
9/2/2008 2:49:40 PM |
| Comment: |
[PHI Redacted] a successful proton radiation receipient that was treated for prostate cancer several years ago. [PHI Redacted]
The overwhelming majority of that evidence was that other treatment methods could cure the prostate cancer, BUT, and there always seemed to be a BUT, the issue of side effects would surface. Either some level of incontinence or sexual function issue was part of the conversation. [PHI Redacted] that was all the evidence needed to decide to use proton therapy which had almost no side effect issues [PHI Redacted]
Since having proton treatment, [PHI Redacted] have not had any issues of side effects limiting lifestyle in any way. [PHI Redacted] also free of prostate cancer according to doctors. [PHI Redacted] very satisfied with proton treatment. I hope that it will still be available for men who need Medicare to pay its cost.
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| Commenter: |
Lamborn, Homer
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| Title: |
Retired |
| Date: |
9/2/2008 2:51:56 PM |
| Comment: |
[PHI Redacted] was treated by the Proton method (@ Loma Linda
CA) in 1996 and doing very well during these intervening years and can certaiinly vouch for this method of trestment.
Homer Lamborn
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| Commenter: |
Stewart, Ronald
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| Date: |
9/2/2008 2:53:54 PM |
| Comment: |
I am sending this e-mail to express my concern
for removing medicare payments for Proton
Therapy.
[PHI Redacted]
I believe the benefit of Proton Therapy was the
reduction in side effects.
I feel that Proton Therapy should be available
to everyone on Medicare who needs the treatmen.
Yours truly,
Ron Stewart |
| Commenter: |
Schick, Uwe R.
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| Title: |
Western Regional Manager |
| Organization: |
Medical Automation Systems Inc. |
| Date: |
9/2/2008 2:55:37 PM |
| Comment: |
I am amused by the intellectual bias of the many posts that attack the positive outcomes of Proton Therapy. Until these doctors face the reality of Prostate Cancer in their own lives, their data will prove whatever they want it to prove.
[PHI Redacted] Prostate cancer at 53. Declining PSA with no side effects from treatment two years later. [PHI Redacted] Choice will drive the best treatment, not clever marketing as some have posted.
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| Commenter: |
Reed, Cliff W
|
| Title: |
Disabled Veteran, Retired Civil Engineer |
| Date: |
9/2/2008 3:00:36 PM |
| Comment: |
I have heard of a proposal to stop Medicare coverage of Proton Therapy for Prostate Cancer. I am not a doctor [PHI Redacted]. My story is very important because my doctors (three) told me that due to my other illness [PHI Redacted]; that I could NOT be treated by their methods because I would die on the operating table! They all agreed that I had approximately one year to live and it would be best to just go home and wait to die! They discussed all options of treatment BUT Proton Radiation Therapy. They contacted a reputable expert at Sloan-Kettering Cancer Institute who agreed with their recommendation. I started to get my final affairs in order and informed my Sunday School teacher that my time in his class was limited. Another student heard my situation and said that can;t be right and she would find a solution. She has become my ANGEL because she found Loma Linda Medical University which was conducting Proton Radiation Therapy for Prostate Cancer. She informed me and I contacted them. [PHI Redacted]. I have had NO adverse side effects from this treatment. Some of my friends have had surgery, X-ray, and seeds for their Prostate Cancer; and all of them suffer from bowel an bladder problems and also erectile disfunction. Please do not stop your coverage of this treatment. It appears that doctors want this coverage stopped because they lose your and my money! Hippocratic oath seems to be DEAD to them! |
| Commenter: |
DeMoss, Bill
|
| Date: |
9/2/2008 3:04:28 PM |
| Comment: |
I believe that it is incredably important to retain the Medicare coverage for Proton
Radiation. Without it, the single best choice for many men diagnosed with prostate cancer will become unavailable.
[PHI Redacted] To a man, [PHI Redacted] very happy that we did not choose
the radical surgery alternative with all the horrible side effects. Regular radiation and seed therapy pale in comparison as well.
[PHI Redacted]
Eliminating this coverage from Medicare would deny men a very effective treatment with very low risk. Certainly costs can be saved elsewhere!
|
| Commenter: |
Giffels, Donald
|
| Title: |
President |
| Organization: |
Giffels Consultants Inc. |
| Date: |
9/2/2008 3:05:29 PM |
| Comment: |
I have been in contact with numerous patients who have been treated with proton beam radiation therapy for prostate cancer. The evidence is overwhelming that this form of treatment provides the best outcome for the patient with respect to collateral damage to healthy tissue and organs. The patients have had minimal side effects common to photon radiation or surgery. I am in favor of the expansion of the number of treatment centers utilizing this technology, and Medicare coverage. |
| Commenter: |
Shuey, John
|
| Title: |
Private citizen. |
| Date: |
9/2/2008 3:06:01 PM |
| Comment: |
RE: Proton Therapy
I am dismayed, though not surprized, at all the postings claiming no advantage for Proton Therapy from practitioners of competing modalities. Apparently the profit motive is more important than the science for some people. The facts are:
1) Proton Beam Radiation Therapy (PBRT) is at least as effective as any competing treatment modality; (I say "at least" because within the last few years PBRT dosages have been increased, but not enough time has yet elapsed to permit a thorough analysis of any potential gains in longer-term efficacy.) and
2) There are studies, both from researchers in California and in Europe that clearly demonstrate that PBRT results in fewer and less severe side effects than do competing modalities.
I personally know of quite a few hundred men treated with PBRT for PCa who have never experienced a side-effect of any material consequence; thus resulting in savings of untolds hundreds of thousands or millions of dollars from follow up treatments NOT required.
Finally...the cost of this treatment can and will come down as more centers are built using newer technology. As for now, those of us lucky enough to have chosen PBRT are thankful for its availability. |
| Commenter: |
Gay, Sr., Robert
|
| Date: |
9/2/2008 3:07:39 PM |
| Comment: |
The accuracy and depth-control of proton therapy made it possible to treat enlarged prostate without the expense and adverse side effects of lutenizing hormone ablation drugs. [PHI Redacted] in relatively good health, the quality of remaining years has been greatly improved. No other treatment, approved by Medicare, that could
accomplish this, is available in the US.
|
| Commenter: |
White, William
|
| Date: |
9/2/2008 3:12:13 PM |
| Comment: |
|
[PHI Redacted] I have many friends that chose other treatment methods and are suffering a wide range of terrible side effects! [PHI Redacted] suffer none of these and strongly feel it is well worth, in the long run, any additional expense to have the Proton treatment method. I urge you to not preclude Medicare coverage for this excellent solution to prostate cancer! |
| Commenter: |
Smith, Richard
|
| Date: |
9/2/2008 3:12:49 PM |
| Comment: |
The negative comments about proton therapy as it applies to prostate cancer, made by several physicians, amount to hearsay and are largely misleading in many of the details. The comments smack of panic rather than sober logical statements.
The record of success, the preservation of quality of life of prostate cancer patients, and the lack of debilitating long term effects (requiring continued coverage by insurance companies) are documented and absolutely important factors in any decision regarding termination of insurance coverage of proton therapy for prostate cancer.
|
| Commenter: |
Gustafson, Paul
|
| Date: |
9/2/2008 3:17:23 PM |
| Comment: |
[PHI Redacted] I am urging that reimbursement for treatment for prostate cancer via proton beam therapy remain intact. After doing some investigating, it seems that the majority of those that reimbursement be discontinued are those who are fully invested in some competing technology. I'm concerned about one's objectivity in those cases.
Furthermore I can state that since treatment have experienced absolutely no lifestyle change. [PHI Redacted] selected selected proton beam therapy because it appears, from a review of articles a found through a MEDLINE search, that, even though other treatment methods may have an equal success rate, the likelihood of negative side effects is less than with the other methods. All journal articles I have read that say that proton beam therapy should not be used because there are other methods with equal success rates, made no comment about the side effects. It's easy for a physician to recommend the cheaper method when he is not the one wearing diapers or a catheter.
During [PHI Redacted] treatment period [PHI Redacted] met a number of physicians (including urologists, oncologists and surgeons) who selected proton beam therapy for themselves. I respectfully encourage that current reimbursement for proton beam therapy remain in place. |
| Commenter: |
Hagemann, Lawrence
|
| Title: |
Chief Technology Officer |
| Organization: |
Digital Recorders, Inc. |
| Date: |
9/2/2008 3:17:42 PM |
| Comment: |
[PHI Redacted] I fully endorse the proton beam therapy approach and support its further coverage under medicare.
I have had friends, relatives, and acquaintances who have had the radical prostate surgery, the Brachy therapy, and the standard radiation procedures. I can only give "first-hand" data that none of the above gave them the ultimate cure and quality of life that men would like to see after 60 years of age.
[PHI Redacted]
Sure, we would like to see massive studies done. but it enough for me that very large and significant institutions in the States and abroad have put up the investment necessary to make this procedure available. And with more research and development, maybe less expensive equipment can be made to do the same work.
I am but one data point in a potential and future study. [PHI Redacted]
My vote is to give proton-beam therapy for prostate cancer a thumbs-up for continued support and coverage! |
| Commenter: |
Cooper, Stuart
|
| Date: |
9/2/2008 3:18:42 PM |
| Comment: |
I want to take this opportunity to comment on
the Proton beam therapy for prostate cancer
proposed rule change.
[PHI Redacted]
It is my understanding that the reason
medicare is considering stopping the
reimbursement for proton treatment is because
there are other procedures that work equally as
well with a lower cost. I disagree with this
premis.
I can only use [PHI Redacted] as an example of the
overall savings to the medicare system or the
private health insurance system when all aspects
of prostate cancer treatment protocal is taken
into account. [PHI Redacted] This decrease in PSA level is, I am sure
commensurate with all other forms of radiation
treatment.
However, if you take into consideration post
treatment (side effect) issues for all forms of
treatment,I believe the cost to the medicare
system would be lower when being treated with
protons. [PHI Redacted] had no additional
treatment costs incident with my prostate cancer
treatment since the conclusion of treatment.
Simply stated, [PHI Redacted] had absolutely no costs
billed to insurance company other than normal
follow up since [PHI Redacted] was treated. [PHI Redacted]
I believe this outcome is a result only due
to the proton radiation treatment. Many studies
have been done that clearly demonstrate, that
when this aftercare aspect of treatment is taken
into consideration, proton beam radiation
treatment becomes far less costly to the medicare
and health insurance system.
Yes, it is true that the proton beam kills
the cancer cells the same way as the photon beam.
The proton beam, however, is more precise and
side effects therefore are far less severe than
with the difuse photon beam. The photon beam,
even when delivered by IMRT clearly kills far
more healthy cells than the proton beam thereby
creating a greater possibility of unfortunate
side effects.
I was told by a physician at the leading
major east coast urilogical center in the U.S.
that no matter what form of treatment [PHI Redacted] chose [PHI Redacted]
would be cured. When I heard this the decision
was easy; statistically go with the least
invasive procedure, that would do the least
harm. Proton therapy was clearly the least
invasive. My choice as of this date has proven
correct. [PHI Redacted] quality of life is no different than
prior to treatment and [PHI Redacted] cost of after care has
been $0.00.
Once you take aftercare costs into account
for all treatments including surgery proton beam
will, in my opinion, prove to be the most cost
effective prostate cancer treatment available.
Medicare should, for this reason, continue to
reimburse patients who seek proton beam radiation
therapy for prostate cancer. |
| Commenter: |
Childers, Richard
|
| Date: |
9/2/2008 3:20:38 PM |
| Comment: |
I would like to comment on the reimbursement of
proton therapy for prostate cancer. [PHI Redacted] was treated
with Proton Beam therapy which was completed 2
years ago. [PHI Redacted] made [PHI Redacted] decision to use this
treatment after talking with many people that
were successfully treated with proton beam at
Loma Linda MC over the past 10 years. I also
spoke with several friends and neighbors that had
the tradition radiation or surgery. Without
exception those that I spoke with that had
traditional radiation or surgery have suffered
unpleasant side effects.
[PHI Redacted]I have encourage several friends whom
have been diagnosed with prostate cancer to go to
Loma Linda. Several have and without exception
are thankful they chose Proton Beam.
I believe in the long run and the absense of side
effects, that Proton Beam will prove less costly
and certainly improve the quality of life.
My experience has been that the surgeons all
recommend surgery and the radioligists recommend
radiation and few are knowledgable of the success
and benefits of proton beam.
My Uroligist commented it was experimental and
too new for him to recommend and didn't have a
clue that Loma Linda has been treating prostate
cancer patients since 1996. I believe if you will
do further research, and be objecttive of the
comments made by surgeons & radiologist, that you
will agree that Proton Beam is a very viable and
beneficial treatment for those that are a
candidates for the treatment.
|
| Commenter: |
Wilcox, Dale A
|
| Date: |
9/2/2008 3:33:02 PM |
| Comment: |
Proton Treatment, Prostate Cancer
[PHI Redacted] received treatment in 1993, had a PSA of 6 that
had rapidly escalated to 9. [PHI Redacted] received a PSA
readout of 3 just recently. [PHI Redacted] have had no side
affects or issues. [PHI Redacted] was advised by a physician to
wait and see that [PHI Redacted] refused.
[PHI Redacted] healthy, well and very satisfied with [PHI Redacted]
treatment and results. |
| Commenter: |
Miller, Richard
|
| Date: |
9/2/2008 3:33:18 PM |
| Comment: |
[PHI Redacted] a prostate cancer patient who was treated
with proton beam therapy ending on [PHI Redacted]. Since then [PHI Redacted] PSA has dropped
gradually and is now at 0.98. [PHI Redacted] experienced
no side effects from this treatment, i.e. no
incontinence or rectal problems. [PHI Redacted]
From [PHI Redacted] contact with other patients under this
treatment at the time of [PHI Redacted] treatment, they all
indicate similar results. [PHI Redacted] was attracted to
proton radiation therapy because of the number of
testimonies by patience on the lack of side effects. |
| Commenter: |
Bergman, Steve
|
| Date: |
9/2/2008 3:33:32 PM |
| Comment: |
In Feb. and March of this year [PHI Redacted] received 45
proton beam treatments with the only side efffects
being mild increase in frequency and urgency in
urinating which ceased after treatment was
completed. The total cost was $48,000 (including
co-pays) as a 65 year old Medicare patient. [PHI Redacted] had
no symptoms to deal with on recovery, no
incontinence, nor erectile disfunction, no rectal
bleeding, no exposure to infection, nothing. I
can't put a value on the lack of side effects or
recovery issues. At my age and hope of growing
much older and staying active....priceless. |
| Commenter: |
Gothard, Donald
|
| Title: |
Retired Engineering Director |
| Organization: |
General Motors Corporation Manufacturing Staff |
| Date: |
9/2/2008 3:38:21 PM |
| Comment: |
Proton Beam Therapy for Prostate Cancer
[PHI Redacted] was treated with protons in 2001 at the age of 66. [PHI Redacted] had subsequent PSA tests every year since [PHI Redacted] treatments and [PHI Redacted] PSA has held steady at less then 0.1 for the past 5 years and with normal DRE tests. [PHI Redacted] While being treated, [PHI Redacted] hiked the foothills in California every day. [PHI Redacted] worked out in the University athletic facility on some days and [PHI Redacted] did a lot of sight seeing during [PHI Redacted] 9 week stay. [PHI Redacted] and I have talked with many prostate cancer patients as I participate in senior's athletic progams for softball and volleyball. It saddens me when I meet men who have had surgery for their cancer and they are incontinent. I talked with one man who's cancer recurred after surgery and then he had photon radiation. He had to have both hips relaced due to the radiation. He cried while talking with me and seeing the shape that I was in - still playing volleyball with no problems.
I recommend proton therapy to all men who ask me for my opinion on what they should do. Unfortunately, most of them cannot afford to travel away from home and spend time away from their work if they are still working. I'm a black American. Prostate cancer is a major killer of black men. Prostate cancer killed[PHI Redacted] They did not get treated for their cancer because they did not want to live with the problems their friends had, and those who ended up with chemotherapy really scared [PHI Redacted] away from any treatments. So he died in pain when he probably could have been saved if he had known of a treatment like proton beam therapy and if he had seen the good results on some of his friends.
When [PHI Redacted] was looking for a treament the urologists all recommended surgery, a cryosurgeon recommended cryosurgery, and those doing photon radiation recommended their specialty along with those doing implants. However, I talked with many patients and those who had proton beam therapy were the happiest with their results and their resultant quality of life after their treatments. [PHI Redacted]
Prostate cancer is a family disease and the wives that I met in the waiting room each day,when [PHI Redacted] was being treated,were 100% behind the treatment their husbands were getting.
Please don't drop Medicare coverage for proton beam therapy. Many of the comments that I read talked about the high costs associated with proton beam therapy. There were some patients being treated when [PHI Redacted] was being treated who were paying the costs themselves. They were convinced that this was the best treatment for them. Don't take away Medicare coverage and take away the chance for a normal quality of life for those who cannot afford to bear the cost of proton beam therapy themselves. Medicare will be the only coverage many might have. All men should have the opportunity to get the best care possible for their afflictions. I think proton beam therapy is the best treatment for early stage prostate cancer.
|
| Commenter: |
Warman, Paul
|
| Date: |
9/2/2008 3:44:16 PM |
| Comment: |
Proton Therapy for Prostate Cancer:
[PHI Redacted] a proton beam radiation treated prostate
cancer survivor. The Proton Beam treatment for
prostate cancer is safer and as effective as
other external beam radiation methods. It has
fewer side effects and there is less collateral
tissue damage than happens with x-ray beam
radiation.
The only people who are denigrating proton beam
radiation are those that don''t make any money
from patients who go elsewhere for this superior
treatment. Medicine is a business!
Before selecting proton beam radiation for [PHI Redacted]
treatment [PHI Redacted] interviewed a couple of radiation
oncologists who use x-ray beam radiation for
their patients and they told [PHI Redacted] "That they could
do just as well as proton beam", they did not say
better. The over 3000 members of "The Brotherhood
of the Balloon" for the most part can verify my
statements about the lack of side effects and the
quality of life enhancements of proton beam
treatment.
The argumernt that there are few proton centers
operating at this time is also bogus. There are
several (at least 5) in operation including MD
Anderson in Houston and many more being built
including Walter Reed Army hospital in
coordination with a major Pennsylvania University
Medical Center.
Proton centers are expensive. They are used for
very specialized cancer treatments that cannot be
satisfactorily completed by other methods.
Without the large number of prostate patients to
carry the overhead, many children will not get
the life saving proton treatments that they
need.
|
| Commenter: |
Cornwall, Fred
|
| Date: |
9/2/2008 3:48:14 PM |
| Comment: |
Re: Proton Treatment for Prostate Cancer.
[PHI Redacted] 65 year old man who was treated earlier
this year for prostate cancer with proton
therapy. [PHI Redacted] selected this form of treatment after
six months of studying alternatives and [PHI Redacted] can
attest to the fact that the proton treatment is
ideal for a healthy man [PHI Redacted], who is
concerned about the two common side effects of
other treatments: incontinence and/or impotence.
[PHI Redacted] completed the proton treatment regimen,
and [PHI Redacted] can tell you that [PHI Redacted] NO side effects at
all. The less expensive alternatives all seem to
have statistics of between 10% and 40%
incontinence and slightly higher impotence
rates. Instead of preventing men from receiving
this treatment method, the government should
encourage the building of new treatment
facilities and generate more competition in the
proton field. This is truly the state of the art
treatment that avoids surgery completely. |
| Commenter: |
Bevan, John
|
| Date: |
9/2/2008 3:54:11 PM |
| Comment: |
I read with concern the proposal by CMS to exclude proton
therapy for prostate cancer from Medicare reimbursement. In
2004, [PHI Redacted]was diagnosed with prostate cancer at the time of [PHI Redacted] 68th birthday. [PHI Redacted] was promptly offered radical prostatectomy by
the chief of urology at a well-known Boston hospital; he also
told [PHI Redacted] that[PHI Redacted] would incur impotence and urinary incontinence
as a result. However, based on conversations with a former
colleague who had chosen proton therapy under similar
circumstances and who incurred neither of these side-effects, [PHI Redacted]
also opted for that treatment mode. As a physicist, [PHI Redacted]
immediately grasped the ability of proton radiation to mitigate
radiation side-effects to adjacent organs. Now, over 4 years
later, neither [PHI Redacted] nor [PHI Redacted] wife could be anything but happy with the
results. [PHI Redacted] PSA level rapidly declined post-treatment and it has
leveled out at at 0.1 ng/dL; plus, [PHI Redacted] zero problems with
impotence, incontinence or any other related dysfunction.
Surgery and other treatment modalities all have their place, and
the outcomes of the various treatments on prostate cancer per
se may well be equivalent. But I strongly believe that lower levels
of side-effects from proton therapy are a fact and this has a
definite effect on Quality-of-Life issues.
On behalf of all proton therapy patients, I urge you to reconsider
your proposal.
|
| Commenter: |
MAKINSON, JOHN
|
| Date: |
9/2/2008 4:01:51 PM |
| Comment: |
[PHI Redacted] completed proton beam therapy for [PHI Redacted] prostate
cancer on 8/4/08 and intuitively feel this was
the best decision[PHI Redacted]. It would not be
possible if Medicare did not cover it.
[PHI Redacted] treatment was actually HDR temporary seeds and
then 28 proton treatments. [PHI Redacted] been suffering
terribly from GI and GU side effects since [PHI Redacted]
HDR. Because of the timing I do not believe it
is caused by the protons.
Please continue to cover this superior treatment
for the patient's sake. |
| Commenter: |
Schaeffer, Hugo
|
| Title: |
Retired Human Resource Director |
| Date: |
9/2/2008 4:11:11 PM |
| Comment: |
[PHI Redacted]68 years old and consider [PHI Redacted] lucky to
have choosen proton therapy over the other
choices as it is non evasive and all the men [PHI Redacted]
had spoken to prior to [PHI Redacted] choosing it indicted [PHI Redacted] that the results were outstanding. It has
been 3 1/2 years since having proton therapy and
[PHI Redacted] had no side effects and everything works
as it should. [PHI Redacted] PSA score is .5 [PHI Redacted] so
thankful that Medicare paid for the treatment as
[PHI Redacted] might not have been able to afford this highly
syccessful prostate treatment. |
| Commenter: |
Ford M.D., Ken
|
| Date: |
9/2/2008 4:12:51 PM |
| Comment: |
I have a 39 year medical background: Orthopedic
Surgeon graduating from Medical School at The
University of Texas in 1969; also I was a U.S.
Air Force Flight Surgeon 1970-1972.
[PHI Redacted]diagnosed with prostate cancer 3 years ago
and performed extensive research before reaching
an obvious decision (Proton Radiation) to be
treated by the best treatment available to not
only cure [PHI Redacted] cancer but to let [PHI Redacted] continue a
wonderful quality of life without urinary
incontinence or impotence. These unwanted side
effects are a significant factor in other forms
of treatment.
Proton radiation was chosen primarily due to
personally talking to over 100 patients treated
by all methods. The overwhelming evidence of
excellent long term results without side effects
made my decision easy.
Please don't take away the ability for someone to
make a well educated decision about their quality
of life following cancer treatment. If you
exclude this treatment it will obviously trickle
down to private health and have a negative effect
on thousands of lives.
Thank you. |
| Commenter: |
Lee, Douglas
|
| Title: |
Managing Director |
| Organization: |
WESST Enterprise Center |
| Date: |
9/2/2008 4:27:47 PM |
| Comment: |
Please do not discontinue Medicare reimbursement
for proton radiation therapy for treatment of
prostate cancer! [PHI Redacted] spent months researching the
various options available [PHI Redacted] for PC treatment
and came to the conclusion that proton treatment
promised the least offensive side-effects. [PHI Redacted]
2.5 years out of treatment and [PHI Redacted] PSA is down to
1.0 and [PHI Redacted] none of the other side effects
which [PHI Redacted] had a 50/50 chance of experiencing from
the current state-of-the-art treatments:
impotence, incontinence, protracted recovery.
Please give others the same chance [PHI Redacted] had to
survive prostate cancer without serious side effects.
Simply put, this technology is AMAZING and should
be supported by our government.
Please feel free to contact me if you have any
questions. |
| Commenter: |
Walker, Ethel
|
| Title: |
RN (retired) |
| Date: |
9/2/2008 4:27:53 PM |
| Comment: |
[PHI Redacted] was diagnosed with prostate cancer 5 years ago. After much research into the various paths of treatment, he opted to have proton beam radiation. Today his PSA is 0.5 holding steady, and he has had no problems from the radiation. This was a painless, bloodless, safe treatment with no damage to healthy tissues.
|
| Commenter: |
Gapp, William
|
| Title: |
Retired CEO |
| Organization: |
Privately owned company |
| Date: |
9/2/2008 4:33:18 PM |
| Comment: |
[PHI Redacted] elected to have [PHI Redacted] prostate cancer treated by
protron radiation in October of 2003 after
researching all [PHI Redacted] options, including direct
conversations with in excess of 60 men who were
treated with other forms of therapy as well as
proton. In addition [PHI Redacted] consulted with numerous
other facilities who did not offer this form of
treatment. Please note that the research [PHI Redacted]
performed resulted in [PHI Redacted] ascertaining that almost
all treatments eradicated the cancer, assuming
that the cancer cells were encapsulated in the
prostate organ. The major difference, however,
was that the side effects from the other forms of
therapy as reported by many patients resulted in
undesirable side effects (ie. incontinence,
impedency, etc.) whereas the proton form of
treatment was essentially void of these
undesirable results. It appeared that most
urologists [PHI Redacted] consulted with (including my own who
is the head of Urology at a major university
hospital and who I had been a patient of for over
10 years) tried to discourage [PHI Redacted] by saying that
they didn't know anything about it other than
it 'wasn't any good'. Obviously their negative
opinions were a result of their inability to
provide this form of treatment as opposed to
their personal knowledge and experience. |
| Commenter: |
Dunlap, James
|
| Title: |
Captain |
| Organization: |
Frontier Airlines |
| Date: |
9/2/2008 4:34:32 PM |
| Comment: |
Proton Therapy,
Medicare and Medicad should continue to offer
Proton Therapy as a treatment for Prostate
Cancer.
Last summer, [PHI Redacted] completed proton therapy for
prostate cancer and could not be happier with
the outcome a year later. [PHI Redacted] insurance company
approved the treatment plan and paid for proton
therapy. If [PHI Redacted] insurance company had not
approved the procedure, it would have been a
real hardship [PHI Redacted] to incur the cost and may
have prevented [PHI Redacted] getting the treatment. [PHI Redacted]would have had a hard time facing the reality
that Proton Therapy was not an option because it
was deemed too expensive by the insurance
company.
And, is it really cheaper to have surgery to
remove the prostate and then incur all of the
cost on follow up visits/medications due to side
effects and disfunctions that surgery causes.
Yes, [PHI Redacted] initial Urologist said you need surgery
and don't worry about incontience or
impotence, "we have drugs for that". In my
opinion this attitude is not doing what is right
for the patient, but what is right for the
surgeons/drug companies and their pocket books!
Just take a look at who is responding against
Proton Therapy. However, if the shoe was on the
other foot and the prostrate surgeon had
prostrate cancer, which treatment would he seek
for himself? Let me tell you the answer from
several DOCTORS I met who were going through
treatment [PHI Redacted] last summer- Proton Therapy
without a doubt!
[PHI Redacted] lived the nightmare of Prostate Cancer
and survived without the complications that my
friends are having who chose surgery. I thank
my fellow coworker everytime I see him for
telling me about Proton Therapy (He had the
treatment 8 years ago! and is doing great). If
it was not for him [PHI Redacted] would most likely be
wearing diapers and impotent at age 43. I thank
God for this coworker, the doctors/staff at the
proton center, and the fact that this wonderful
option for treatment was an approved procedure.
I sincerely hope proton therapy will be
available to anyone with this type of cancer.
By far, this option is the best decision you
will ever make. [PHI Redacted] continuing to enjoy life
with absolutely no complications and [PHI Redacted]. [PHI Redacted]been able to continue working and
supporting [PHI Redacted] family with little down time and
no side effects. [PHI Redacted]was never sick, did not lose
[PHI Redacted] hair, and played tennis everyday with [PHI Redacted]
family after the treatment! I hope it will be
the wave of the future in treating many types of
cancer.
It would be a crime for anyone to take away this
option for treatment under their insurance
benefit.
Sincerely,
Captain James K. Dunlap |
| Commenter: |
Wadsworth, Craig
|
| Title: |
Certified General Contractor |
| Date: |
9/2/2008 4:40:35 PM |
| Comment: |
Regarding Medicare Coverage of Proton Beam
Radiation:
[PHI Redacted] opted for Proton Beam Radiation treatment for
stage 2C prostate cancer in early 2002; because [PHI Redacted]
could see from the published scientific evidence
that it was the most accurate form delivering the
highest dose of radiation with,the least chance
of collateral damage. [PHI Redacted]
Now that M D Anderson, U of Florida Shands, Mass.
General and several other leaders in cancer
treatiment have made the commitment to construct
these new Proton facilities; I am reassured that
regardless of the cost, Protons are a superior
modality. Medicare should not be looking for the
cheapest treatment or excluding Protons from a
doctor/patient's pallate.
Craig D. Wadsworth
CGC1507136 |
| Commenter: |
Randolph, Benjamin
|
| Date: |
9/2/2008 4:40:39 PM |
| Comment: |
[PHI Redacted] a recipient of very successful proton beam
treatment for prostate cancer. [PHI Redacted] choices
because of health and age were very limited and
[PHI Redacted] research into a very highly researched subject
included a consultation at Johns Hopkins. [PHI Redacted] I believe the total cost was in the
neighborhood of $50,000. Statistically, the
results of Proton Beam therapy was comparable to
other therapies and much less invasive to
adjoining organs, thus had fewer side effects.
[PHI Redacted]PSA is and has been less than 0.1
since treatment. Honestly, I believe that this
treatment is a life saver.
benjamin O randolph
|
| Commenter: |
Benchoff, Donald
|
| Title: |
CAPT |
| Organization: |
Retired |
| Date: |
9/2/2008 4:50:43 PM |
| Comment: |
I want to lend my support for the continued Medicare support
for proton beam therapy for prostate cancer. [PHI Redacted] I can attest to the
fact that the side effects are minimal to none. The effectiveness
of the treatment, in terms of rendering the PSA to less than .01
in less than 6 months post treatment, in effect was a cure. The
treatment itself, was painless and free from the side effects of
other modalities. The loss of one's sexuality, incontinence, etc,
were not problems[PHI Redacted] to deal with [PHI Redacted] other forms of treatment (traditional radiation, surgical
removal of the prostate, cryosurgery, etc.). I am thankful I
learned about proton beam therapy [PHI Redacted] |
| Commenter: |
Hartwigsen, Charles
|
| Date: |
9/2/2008 5:03:14 PM |
| Comment: |
[PHI Redacted] a former Prostate Cancer patient. [PHI Redacted] PSA was
9.8 in May of [PHI Redacted]. The doctor said because of [PHI Redacted]
Leukemia (CML), raditation was [PHI Redacted] only option to
fight the cancer. After [PHI Redacted] spoke with the
radiologist and heard the side effects to expect,
[PHI Redacted]. [PHI Redacted] chose
Proton therapy, Medicare paid for it. [PHI Redacted] had no
side effects. Therefore, Medicare did not have to
pay any additional expenses for follow-up care.
[PHI Redacted]PSA was 0.8 and [PHI Redacted] doing very
well. Many of my friends who chose other types
of treatments are continuing to have health
problems and ongoing treatments. I think in [PHI Redacted]
case, Medicare saved money by paying for [PHI Redacted]
treatment. When there is a better treatment, why
not use it. When [PHI Redacted] told the first radiologist [PHI Redacted]
choice, she said "we will all be doing it that
way in the future." |
| Commenter: |
Richardson, Jack
|
| Title: |
Mr. |
| Organization: |
Retired |
| Date: |
9/2/2008 5:10:16 PM |
| Comment: |
I believe Medicare's proposal to stop paying for proton beam therapy as a treatment for prostate cancer is a serious mistake. The proposal is based on a mistaken belief that it is too costly and is not better than alternative treatments. The 7 year study has been posted which shows that proton beam therapy is every bit as effective, if not more so, in treating prostate cancer as the best alternative methods of treatment. Further, those of us who have had their prostate cancer cured by proton beam therapy know that there are virtually no side effects with proton beam therapy. That is not true of any of the other forms of treatment. Many types of treatment will kill the cancer, but proton beam therapy is the only one with virtually no side effects, resulting in a better quality of life for the patient.
It is interesting to note that the people who support the position of stopping the payment for this treatment are the professionals who offer an alternative treatment. It looks like they are trying to eliminate a superior treatment with which they cannot compete.
I believe it would be a mistake to discontinue tose payments. They are critical to allowing many patients to obtain this treatment. |
| Commenter: |
Waldbauer, Donald
|
| Date: |
9/2/2008 5:12:48 PM |
| Comment: |
This comment relates to the use of Proton Beam
treatment for Prostate Cancer. [PHI Redacted] was diagnosed
with prostate cancer 6 years ago. After
extensive research and interviews of many others
diagnosed and various treatments, [PHI Redacted] chose Proton
treatment. That proved to be the right choice.
Limited side affects, great results, a PSA .02
within 1 year and still the same 5 years later.
I personally have referred in excess of 10 people
for same treatment with the same positive
results. The consideration of not including this
treatment makes no sense to me. |
| Commenter: |
Cook, Charles F.
|
| Title: |
Retired Corporate Executive |
| Date: |
9/2/2008 5:15:20 PM |
| Comment: |
As a 69 year old, healthy, active man, [PHI Redacted] was
diagnosed with prostate cancer in [PHI Redacted]. [PHI Redacted] due diligence on all available treatments
including proton beam tehrapy. [PHI Redacted] research
included contacting men who had selected each of
the available protocalls to understand their
experience and status after various lengths of
time after their treatments. [PHI Redacted] also compiled
information from personal friends and two family
related members who had surgery, brachytherapy,
andIMRT. [PHI Redacted] lost two very close friends who died of
prostate cancer years after they had surgery -
very sad and difficult deaths. [PHI Redacted] also
compared the experiences of patients who chose
other treatments. While many were fine, there
were just too many whose experiences had changed
their lives in a negative manner. [PHI Redacted] choose proton
therapy and [PHI Redacted] in continuous communication with
over 100 other proton graduates. All have
experienced very little or no side effects and
continue the quality of life that they enjoyed
prior to proton therapy.(a very positive
incentive)[PHI Redacted] now completing two years of post
treatment[PHI Redacted]
I am concerned that too many of the critics of
proton therapy for prostate cancer are
individuals/organizations with competing treatment
alternatives. |
| Commenter: |
Shein, F. Richard
|
| Date: |
9/2/2008 5:22:13 PM |
| Comment: |
[PHI Redacted] was successfully treated for prostate cancer
with protons at Loma Linda Hospital four years
ago. That hospital has ten years of
scientifically accurate research attesting to
it's extraordinary ability to successfully treat
the patient with virtually no incontinence and
less impotence than the alternatives as a result.
It is understandible that there is resistence
from the medical field, for there is safety in
sticking with what you know and do. |
| Commenter: |
Spruell, Alfred
|
| Title: |
Captain |
| Organization: |
USN (Ret) |
| Date: |
9/2/2008 5:26:23 PM |
| Comment: |
Funding of Proton Therapy to treat Prostate
Cancer; It would be a huge mistake to withdraw
Medicare Funding for Proton Therapy for Prostate
Cancer (PCa). [PHI Redacted]
This is a wonderful, and highly effective
treatment that leaves no side effects for over
95% of those treated. That statement cannot be
made by any other PCa treatment regimen. Many
doctors, particularly Urologists, do not want
this treatment to be funded because it threatens
their surgical livlihood. But if the truth is
known, this is the most effective treatment
available. I realize that only five Proton
Treatment Centers are currently operating, but I
understand that five more are under construction,
and 40 more are in planning. To reduce the
Medicare funding for this therapy, would be to
deny the best treatment available to combat this
disease for a huge number of men. Over 250,000
men are diagnosed with PCa each year, with over
40,000 deaths attributed to this dread disease.
Thank you, Alfred Spruell, Capt.,USN(Ret) |
| Commenter: |
Barna-Lloyd, John
|
| Title: |
None |
| Organization: |
None |
| Date: |
9/2/2008 5:31:19 PM |
| Comment: |
I just read the postings to this forum on Medicare
coverage of treatment of Prostate Cancer by Proton
Bream Therapy. So far all were written by
physicians who offer treatment other than Proton
Beam. [PHI Redacted] was successfully treated by Proton beam
therapy in the year [PHI Redacted] after 2 failed treatments
by other mean beginning in [PHI Redacted]. All modes of
treatment can kill the cancer. All will have side
effects of the treatment. The proven fact is that
of all patients within the same diagnostic groups
(same PSA and Gleason score ranges) have less side
effects when treated with Protons. (Loma Linda
University Medical Center Published Studies.) The
reduction of side effects and the maintenance of a
high quality of life standard is the principle
reason for continued use of Proton Therapy. I urge
you to continue support of this medical necessity
by Medicare.
|
| Commenter: |
Allen, Lloyd
|
| Date: |
9/2/2008 5:35:00 PM |
| Comment: |
I wish to speak in behalf of continuing Medicare
coverage for proton therapy. [PHI Redacted] was diagnosed with
prostate cancer in [PHI Redacted]. [PHI Redacted] received 40 proton
treatments with no side effects or recurring problems. I
have visited with other cancer victims and have not
found anyone that had any other type of treatment with
the success that [PHI Redacted] had with proton. All other patients
suffer from some type of incontinence or become
impotent. This is a painless treatment and to not allow
medicare reimbursement is not in the best interest of
those who are unfortunate to have the problems. I am
truthful when I say that it is the only treatment I would
have in the future. |
| Commenter: |
McMillan, J Richard
|
| Title: |
Attorney at Law |
| Date: |
9/2/2008 5:37:26 PM |
| Comment: |
It is interesting to note that the major
opposition to proton radiation treatment for
prostate cancer patients comes from physicians
(primarily urologists) whose practices are
threatened by this more advanced technology and
one not available in their locale. It is
important to remember that urologists are
surgeons and, most (not all) will recommend
surgical procedures rather than exploring those
non-surgical options having fewer undesirable
side effects with their patients. [PHI Redacted]This was my
personal experience with three well known Dallas
urologists I consulted in Dallas. One would
hardly expect an economy car dealer to refer his
prospective customer to the Lexus dealership.
While proton radiation is currently the more
expensive treatment, the opening of new
facilities nationwide will make this highly
desirable form of treatment more cost effective.
As more facilities are opened, the unit cost per
treatment will be reduced substantially, making
it available to many citizens at a lower cost
not just the wealthy few. The important
consideration is the improved quality of life
provided to those having this option made
available to them as compared to traditional
surgical and external beam radiation treatments. |
| Commenter: |
Woods, Bert
|
| Date: |
9/2/2008 5:39:56 PM |
| Comment: |
[PHI Redacted] I wish to say that the proton therapy
treatment is the best for prostate cancer. I believe it's success rate
is as good or better than any other modality, and it has negligable,
if any, side effects. It is non invasive, also. The fact that so many
facilities are on line already, or under construction, is testimony to
it's recognized worth. For Medicare to stop reimbursements for
this form of treatment is foolish in my opinion. More and more
insurance companies are coming on board. Don't even think of
reversing this direction. |
| Commenter: |
Elmes, Gordon
|
| Date: |
9/2/2008 5:49:50 PM |
| Comment: |
[PHI Redacted] very satisfied recipient of proton
radiation therapy in 2004. The absolute absence
of any side effects and the diminished need for
follow-up medical treatment makes this method of
treating prostate cancer a very viable
alternative. [PHI Redacted] PSA, lifestyle, and overall
health are evidence of this being a superior
treatment. Any attempt to reduce or eliminate
the coverage for this methodology would be a
grave mistake. In contrast, I would suggest that
those advocating not covering proton radiation
would educate themselves more completely by
communicating with the patients who have been
treated and comparing the cost of medication,
follow-up procedures, and patient problems
between those who have been treated by other
methods with proton patients. [PHI Redacted] in excellent
health without any pain, incision, medication, or
side effects due to the proton treatment. |
| Commenter: |
Locke, Richard
|
| Date: |
9/2/2008 6:11:13 PM |
| Comment: |
Proton Radiation for Prostate Cancer
[PHI Redacted]
While you are in the decision making process I
implore you to seek out data on the relative rates
of side effects such as impotence and incontinence.
If, as I'm reading there are no unbiased data, I
suggest you leave things as they are until
unbiased data is developed.
Also please consider "learning curve" effects.
Protons are less used, and therefore there will be
a steeper learning curve and cost reduction in the
future compared to more mature technologies.
I'm an engineer and recognize that the Bragg Peak
effects make protons inherently more directable
than un-ionized particles. Stopping the use in
prostate cancer will slow an inherently better
technology from developing.
It would be like stopping development of
semiconductor memory in the 1970s because it
wasn't yet proven more cost effective than ferrite
cores.
Please reconsider.
Thank you |
| Commenter: |
taylor, hugh
|
| Title: |
Pres. |
| Organization: |
Taylor & Associates, Inc |
| Date: |
9/2/2008 6:11:30 PM |
| Comment: |
[PHI Redacted] I can say
with confidence, that proton treatment of
prostate cancer was effective [PHI Redacted]
since 2001-other than skin cancer, prostate
cancer is the most common of cancers.
In my view, until another treatment is proven
superior (with less potential side affects)let's
keep proton therapy available as an alternative
to surgery & other forms of radiation and
prostate cancer treatment.
As a 44 year veteran working in the insurance
industry, I have seen far too many
patients/clients who resisted (delayed) surgery
or developed complications from surgery or photon
radiation & thought they were cured, but the
cancer returned and metastasised.
In my personal conversations with medical
professionals, it's been very difficult to find
professionals (including MD's) who are unbiased
about the cancer treatment process they've been
trained in - proton thrapy was the perfect
alternative for me, as well as for many of my
friends who were treated for prostate cancer at
Loma Linda.
It would seem that as the availability of proton
treatment centers increase around the country,
and the # of cancer patients being treated
increase, the costs should also decrease over
time.
Rationing health care & eliminating coverage for
proton treatment of prostate cancer is NOT the
answer. Not now!
Please, let's not "throw the baby out with the
bath water". Until a treatment evolves that
proves to be better, keep proton treatment
reimbursement available to the nearly one qtr
million men who are diagnosed with PC annually.
Rationing health care in this area - makes no
sence to me. The cost of alternative treatments
to proton therapy for prostate cancer could prove
more costly in the long run-when one considers
the higher degree of failure of other forms of
treatment. |
| Commenter: |
Gadd, Joseph
|
| Title: |
Retired |
| Organization: |
None |
| Date: |
9/2/2008 6:15:47 PM |
| Comment: |
Proton Prostate Treatment
[PHI Redacted]was diagnosed with
prostate cancer, and completed the 45 session
proton treatment regimen. [PHI Redacted] experienced no pain,
incontinence, impotence, bleeding, loss of energy,
or any side effects that may affect patients
undergoing prostate treatment. The non-invasive
proton treatment for [PHI Redacted] was superior in terms of
cancer free status and low PSA post-treatment, and
lack of any unpleasant or damaging side effects
during and post-treatment, as compared to men whom
I know who underwent surgery, brachytherapy, and
conventional radiation. The democracy of the
proton treatment is attested to by some other
proton patients who were refused
surgery/brachytherapy/conventional radiation
(S/B/CR) due to particulars of their cases, such
as large prostate, previous S/B/CR treatment,
Gleeson or PSA scores, etc. I urge you to retain
proton treatment for prostate cancer as an
approved Medicare benefit. |
| Commenter: |
Sauer, John
|
| Date: |
9/2/2008 6:29:34 PM |
| Comment: |
[PHI Redacted] received proton radiation therapy for prostate
cancer last year. I have been in the engineering
medical field for 35 years and did very extensive
research on the methods and outcomes of variuos
prostate cancer treatments. [PHI Redacted]had a good
outcome with quick reductions in PSA levels. [PHI Redacted]had no side affects of
any kind. [PHI Redacted] quality of life is fantastic and
future is bright. I know many others who have had
other treatment options and have had significant
side affects. The long term no-cost followup of
having no side affects offsets any added cost of
the treatment. What price do you assign to the
quality of life? |
| Commenter: |
Vollhardt, Peter
|
| Title: |
Professor |
| Date: |
9/2/2008 6:34:12 PM |
| Comment: |
Proton beam therapy for prostate cancer: I have studied the subject matter thoroughly. As a scientist, I have access to the primary medical literature, and I have carefully scrutinized over 100 publications on the subject. I have also had discussions with over 20 men who had so-called conventional treatments (radical prostatectomy, various forms of external beam radiation, and two forms of brachytherapy), in addition to 30 men who had proton therapy. My conclusions are that, indeed, as argued by several contributors to this compilation, all forms of treatment are equally successful. The difference lies in the side effects, particularly posttreatment.
My particular concerns with respect to treatment are the minimization of the chances for urinary (i.e. incontinence) and sexual (i.e. erectile dysfunction) complications. My research shows that proton radiation offers a much better chance of avoiding such complications than conventional treatment. Some adverse medical literature notwithstanding, there are numerous reports in primary publications, most significant among them those by doctors/researchers without a vested interest in any of the forms of therapy, which point to the superior aspects of proton radiation in these respects. These papers show that it has become a standard alternative to other methods, that quality of life issues have become paramount for men afflicted with prostate cancer, and that the choice of treatment should be left to the patient.
The statement that there are no rigorous studies the compare modern conventional IMRT with proton radiation therapy is correct. What is incorrect, indeed disingenuous, is to construe this as an argument against proton radiation as a treatment choice. There are no studies that show that conventional treatment is better or even equal to protons. However, there is unequivocal science. Nobody can argue with the existence of the Bragg peak and therefore the corresponding reduction in exposure of nontarget tissue.
I therefore would have to vehemently disagree with the proposal to stop Medicare reimbursements for proton therapy in the treatment of prostate cancer.
|
| Commenter: |
Bruno, Fred
|
| Date: |
9/2/2008 6:55:17 PM |
| Comment: |
[PHI Redacted] recieved Proton radiation for prostate
cancer from [PHI Redacted]. The results are
nothing short of fantastic. [PHI Redacted] experienced no side
effects while recieving treatment and no side
effects after treatment. There probably is no
difference in the effacy of Photon treatment
versus Proton treatment as far as eradication of
the prostate cancer. There is however, a very big
difference in the side effects and the resultant
quality of life between Proton radiation and
Photon radiation. Bowel burns, incontinence,
bladder burns,and erectile disfuntion are
uncommon with Proton radiation. This NOT true
with IMRT Photon radiation. When [PHI Redacted] was advised
that needed to recieve radiation and was
directed to Photon radiation, was told that would become impotent and that incontinence was
likely and that bladder burns and bowel burns
could occur. Instead chose Proton and couldn't
be happier. Don't take the shortsighted view.
These recurrent issues of Photon radiation will
cost much more in the long run of a persons life.
I am a board member of the Prostate Cancer
Educational Council and I see these issues
associated with Photon radiation all the time.
Many hospitals across the country are considering
installing Proton Radiation centers. There is a
very good reason this is happening.
Fred Bruno |
| Commenter: |
Plummer, Cecil
|
| Title: |
retired |
| Date: |
9/2/2008 6:57:21 PM |
| Comment: |
I believe that proton therapy has the most benefits to the ordinary patient. The non invasive treatment allows the patient to carry on a normal lifestyle without weeks or months of physical side effects that are present with other treatments for prostate cancer. I would compare it to breast treatments for the importance of the treatment to the individual. |
| Commenter: |
Eberhardt, Charles
|
| Title: |
Apt. Owner |
| Organization: |
NA |
| Date: |
9/2/2008 7:04:33 PM |
| Comment: |
re: Medicare reimbursements for proton therapy for treating prostate cancer
[PHI Redacted]was diagnosed with prostate cancer. After six months of rigorous medical research, plus personal interviews with professionals in the field, as well as anyone [PHI Redacted] could locate that had gone through treatment for prostate cancer such as friends or friends of friends, [PHI Redacted] came to the only conclusion that made any sense for proton therapy. [PHI Redacted] considered nerve-sparing surgery, seeding, 3-D conformal radiation, and proton therapy. [PHI Redacted] chose proton treatment because of the following indisputable facts: less invasive than surgery, less chance of complications from surgery, less recovery time, and less chance of adverse side-effects such as incontenance and impotency with effectively the same success rate as surgery. HMO refused to pay for treatment because they said proton therapy was not necessary, more costly, and that no current, comparative studies have been conducted to prove it was better than conventional prostate cancer treatments. [PHI Redacted] paid for [PHI Redacted] treatment, then lodged a formal complaint, and eventually, because of solid evidence to the contrary, was reimbursed by HMO. [PHI Redacted] healthy and fully functioning.
I notice on this website that most of the people opposed to this therapy are professionals in direct competition. I think it is very, very important that Medicare research the facts and the data and not rely on personal opinions to guide them. This, of course, is my personal opinion, but I wanted to convey to you my alarm at the possibility that Medicare would not continue to cover proton therapy because I feel it is a highly viable choice for those who qualify.
Sincerely,
Charles Eberhardt
|
| Commenter: |
Schnabel, Rudolph
|
| Date: |
9/2/2008 7:22:29 PM |
| Comment: |
|
[PHI Redacted] did extensive research before deciding on
pursuing Proton Radiation Therapy for [PHI Redacted]
treatment for many reasons, several of which are:
Proton Radiation treatment, according to the
reseach reports read, proved to be be highly
effective in 90+% of cases completed. It has now
been used for 18 years with excellent results. [PHI Redacted]
did not experience any side effects such as
impotence and incontinence and was able to carry
on all normal activities during treatment
including bike riding, snow skiing, hiking,
swimming and working out at the gym. [PHI Redacted]
cancer free for the past 6 years and continue to
do all activities as before. I know that the
PSA is indicative and controversial as a measure
of success, yet is a measure that is availble.
PSA has been 0.7 for the past 3 years. [PHI Redacted]
completely satisfied with treatment choice and
highly recommend Proton Radiation Therapy to friends and anyone who asks about their
treatment choices.
I am extremely disturbed tha CMS is considering
redacting that treatment and considering not
paying for it in the future. Without Medicare it
would have been an exteme economic hardship [PHI Redacted] to use Proton Radiation Therapy as my
treatment choice. Please continue to pay for
this exellent and effective treatment.
Yours sincerely,
Rudolph Schnabel |
| Commenter: |
Gimbel, howard
|
| Title: |
MD |
| Organization: |
Loma Linda University |
| Date: |
9/2/2008 7:22:32 PM |
| Comment: |
Regarding Proton Therapy for Prostate cancer:
I graduated with an MD degree in 1960. Two members of my class developed prostate cancer about the same time in 2001. One had proton treatment and never missed a day of work and had virtually no symptoms during treatment or since. The other was off work for weeks and had a period of incontinence for weeks. Their experience and that of other proton therapy patients that I have talked to convinces me that there is a significant benefit to proton treatment for this condition as well as spinal cord tumors etc. |
| Commenter: |
Harris, Roger
|
| Date: |
9/2/2008 7:24:09 PM |
| Comment: |
Proton radiation therapy for prostate cancer.
[PHI Redacted] was diagnosed with prostate
cancer after a biopsy. PSA=14.9 and a Gleason
score of 9. [PHI Redacted] was accepted for proton and photon
therapy at Loma Linda University after Medicare
and secondary Insurance carrier agreed to pay
for it. [PHI Redacted] 9 week treatment ended [PHI Redacted]. [PHI Redacted]
just had a 4 month complete evaluation. PSA 0.2,
clear Ct scan and no sign of cancer. All urinary
problems are gone, ([PHI Redacted] Sexual function has returned to
an almost normal state. [PHI Redacted] I would hate to see Medicare turn it's
back on such an important and effective prostate
cancer treatment option. Roger Harris |
| Commenter: |
Jones, Fuller C.
|
| Title: |
Project Engineer (Retired) |
| Organization: |
NASA Shuttle Launch Operations |
| Date: |
9/2/2008 7:34:30 PM |
| Comment: |
I believe that Proton Therapy is a valid and useful treatment for prostate cancer. As a graduate mechanical engineer and retired NASA employee, I feel that my experience qualifies me to do the research necessary to sort out the true facts regarding proton therapy.
I have done so and it is apparent that those individuals who seem to be saying that proton therapy centers should not be built, and that Medicare should not reimburse a patient for the cost of proton therapy. are serving their own purpose and not that of the individual patient.
Proton therapy is uniquely applicable to treat many forms of cancer, including prostate cancer. When the cost of follow-on care is included for radical prostatectomy (surgery), the cost of proton therapy suddenly seems much more comparable.
It appears to me that there is an element of fear (loss of income) apparent in those who suddenly are speaking out against proton facilities. So long as Loma Linda University Medical Center was alone in providing the treatment, then after about ten years, Massacusetts General Hospital joined them, the threat was so small as to be ignored. There were no complaints and protests about the use of protons and the insurance coverage of same for over fifteen years.
Now, with the advent of more amd more proton centers, it suddenly has caused a great uproar!
I say foul! Those of you with a medical and/or scientific background should study the real issues here and when you do you will become proton advocates instead of enemies.
Fuller Jones |
| Commenter: |
Freedman, Barry
|
| Title: |
retired financial advisor |
| Date: |
9/2/2008 7:37:58 PM |
| Comment: |
How about listening to a patient who went through
Proton Beam therapy for Prostate Cancer instead
of just listening to Drs who have a vested
interest in their own treatment methods. [PHI Redacted]
oncologist recommended and was within days of
surgery. By accident [PHI Redacted] learned of proton beam
therapy. After much research [PHI Redacted] approached the
surgeon and asked him what he would, and he said
surgery is always on option later if the proton
bean doesn't work so go with the proton beam for
now. Not only was it successful, but PSA
levels have dropped from a high of about 5.0
to .1 - now after 5 years since treatment. No
Loss of function, no surgery, etc. How could you
not want to continue this coverage through
medicare? You should be encouraging more proton
beam centers not less. Yes, the building of a
cyolotron is expensive...but it beats the hell
out of the prospects of surgery or broad beam
radiation especially when caught early. Please be
sensible... |
| Commenter: |
Bunten, Ted
|
| Date: |
9/2/2008 7:54:59 PM |
| Comment: |
[PHI Redacted] prostate cancer survivor with
an undergraduate degree in engineering. [PHI Redacted]
choice of treatment was Proton Therapy at Loma
Linda University Medical Center.
More than eight years after treatment [PHI Redacted] cancer
free, [PHI Redacted] psa is below 0.10 and [PHI Redacted] do not have any
problems with side effects.
I can not speak with scientific authority since I
am neither a oncologist or physicist but based on
[PHI Redacted] experience, proton treatment for
prostate cancer was definately worth the cost. |
| Commenter: |
burnidge, william
|
| Date: |
9/2/2008 8:18:37 PM |
| Comment: |
|
[PHI has been redacted from this comment]
receive Proton Radition Therapy for a very aggressive type of Prostate Cancer in . Readings were over 5 for Psa and a Gleason count of over 9. This preculeded from having seeding done. Regular Radiation would have caused other problems because of the . Removal of the prostate was not a good solution as would have been intontinent . already had some urinary problems because of the previous surgery. Proton Radiation was only home. was accepted as a patient after Eurologist, Gastroentologist and Internist all recommended that have this treatment. They all contacted LLUMC on behalf. At this date a PSA of 0.02. treatment was in May, and June of . what received in treatment was not only only hope but probably saved from either being further disabled or havine cancer continue to take life. How can you say it is too expensive. Is it better to have people go through procedures that lessen their quality of life for a few dollars? Please reconsider this proposal!!!! |
| Commenter: |
Tipton, Howell
|
| Date: |
9/2/2008 8:51:27 PM |
| Comment: |
|
After a biopsy in 2006, [PHI Redacted] was told that [PHI Redacted] had
prostate cancer. [PHI Redacted] was shocked. Being an
engineer, [PHI Redacted] wanted more data. [PHI Redacted] first
recommendation was surgery. [PHI Redacted] researched the
complications and rejected this option. [PHI Redacted] then
had a consultation with an oncologist that
specialized in radioactive seeding. These
complications were not acceptable[PHI Redacted]. [PHI Redacted] then
consulted with a radiologists on the merits of
intensity modulated radiation. This seemed [PHI Redacted]
to be better than seeding or surgery, but had its
own complications. I heard from a friend about
his success with protron treatment and visited
the Loma Linda Cancer Center. I live near Loma
Linda in California so I was able to visit and to
learn more about proton treatment. As an
engineer, I understand the difference between
photon and proton radiation. That convinced [PHI Redacted] to
go with protron treatment. After treatment, [PHI Redacted] gone from a PSA of 6 to 0.45 and continuing
to drop. Just as important [PHI Redacted] not been
inflicted with any side effects of the kind that
worried [PHI Redacted] with the other treatments. Please
continue to let all prostate cancer patients to
make the choice that is right for them. Do not
eliminate the financial ability for those on
medicare to opt for the proton treatment. Thank
you. |
| Commenter: |
Arnold, Hubert
|
| Date: |
9/2/2008 8:57:12 PM |
| Comment: |
|
In [PHI Redacted] had a PSA of 25. After consulting with
a urologist [PHI Redacted] was informed that surgery was [PHI Redacted]
only viable option. After research [PHI Redacted] decided to
undergo proton therapy. Side effects were and
are minimal and [PHI Redacted] PSA for 2 years has been
between 0.00 and 0.04. |
| Commenter: |
Lester, Leonard
|
| Date: |
9/2/2008 8:59:21 PM |
| Comment: |
I understand that reimbursement for proton beam
therapy for prostate cancer is in danger of being
reduced or eliminated. I wish to voice my
concern that the most effective treatment out
there will be unavailable to the people who would
benefit the most. [PHI Redacted] The sad
stories of friends and loved one's who have had
on-going complications from other treatments and
the dearth of complaints from the dozens of
proton graduates I know have convinced me that
the research and antidotal evidence I have
discovered is accurate. Proton treatment is far
away the preferred treatment. |
| Commenter: |
Siano, Paul
|
| Date: |
9/2/2008 9:10:22 PM |
| Comment: |
[PHI Redacted] was diagnosed with prostate cancer.
[PHI Redacted] PSA was 6.1 and had a Gleason score of 9. (4+5)
[PHI Redacted] prostate was the size of a grapefruit. After
considering all available options, [PHI Redacted] chose proton
radiation at Loma Linda because the morbidity rate
was similar to other options but the risk of side
effects seemed to be reduced. After proton,
conventional radiation, and two years of hormone
ablation therapy, [PHI Redacted]
PSA is 0.45 with no side effects. [PHI Redacted] will
always be grateful to the wonderful people who
helped [PHI Redacted] through treatment and to those who
developed this technology so that [PHI Redacted]
enjoy the quality of life [PHI Redacted] after
treatment more than five years ago. The
increasing number of proton radiation centers is
clearly a good thing. As time goes on, as the
technology improves, and as knowledge expands,
this outstanding treatment will become available
to even more people who hear their Doctors say,
"The results of your biopsy were positive. You
have cancer." Proton therapy works. "Side
effects" are more than just words. |
| Commenter: |
Schwartz, Bruce
|
| Date: |
9/2/2008 9:50:59 PM |
| Comment: |
[PHI Redacted] diagnosed with prostate cancer but [PHI Redacted]
refuse to accept the barberic choices that are
offered as conventional protocol. [PHI Redacted] found out
about the proton beam therapy and [PHI Redacted] desire is to
have that option available to me. However, [PHI Redacted] a
member of Kaiser Permanente and they refuse to
cover the cost. The cost is far more that [PHI Redacted] can
affore to pay for [PHI Redacted]. Since Kaiser's policy
perpetuates this archaic and brutal protocol and
does not permit the less invasive and far
superior therapy of proton beam there is a chance
that [PHI Redacted] will succumb to the prostate cancer.
However, it is better to die that to undergo the
conventional choices of cut, burn or poison. [PHI Redacted]
plan is/was to change medical providers so that [PHI Redacted]
can use [PHI Redacted] Medicare to cover the cost of the
proton beam therapy. I hope that nothing happens
to prevent the Medicare coverage for proton beam
therapy and, possibly, resulting in [PHI Redacted] death. |
| Commenter: |
Healey, Robert
|
| Date: |
9/2/2008 10:09:21 PM |
| Comment: |
| [PHI has been redacted from this comment]
This comment is in support of Proton Beam Therapy
(PBT) for treatment of prostate cancer.
Early in was diagnosed with prostate cancer
and the local medical practitioners each
predictably recommended treatment using their area
of expertise; surgery, conformal beam xray
radiation, or seeds. When found out about PBT
looked for diverse sources of information and,
using background in engineering and physics,
concluded that PBT was the obvious treatment which
had the highest probability of success with the
least side effects. When announced decision
to use PBT, the local medical practitioners tried
to convince that the treatment was
"experimental, unproven, a thing of the past and
if it was any good why weren't there many more
centers delivering PBT."
As expected, health insurance Co. refused to
approve it, but, thankfully, was able to move to
Medicare and obtain the PBT.
It has been 7 years since treatment. There was
no discomfort, pain, or side effects during
treatment and none over the 7 years since. family doctor has reported continuing improvement
in prostate condition via blood test and
digital examination annually.
Now that the success of the PBT treatment has been
broadly recognized, there are many more centers
opening both in the U.S. and other countries.
Before a decision is made to deprive Medicare
patients of this excellent treatment, CMS should
at least undertake an unbiased evaluation of PBT
vs. other treatments which are supported by
practitioners who have a vested interest in
removing PBT from the choices available to
Medicare cancer patients.
While undertaking this evaluation, CMS might also
subsidize studies aimed at cost reduction of PBT,
since cost seems to be the only remaining argument
in use against PBT. Just as other arguments have
proven false, I wonder if this one will also prove
false when such things as re-treatment, etc. are
considered relative to the other treatments available.
Respectfully submitted,
Robert Healey |
| Commenter: |
hagen, Weldon J.
|
| Date: |
9/2/2008 10:12:45 PM |
| Comment: |
|
[PHI Redacted] had treatment 11 years ago with no side
effects.Many of the men that have other treatment
have adverse side effects that I would prefer not
to have. I feel that [PHI Redacted] received the best treatment
possible.[PHI Redacted] welcome the chance to share [PHI Redacted]
experience
with anyone considering prostate treatment. |
| Commenter: |
Drescher, Thomas
|
| Date: |
9/2/2008 10:35:59 PM |
| Comment: |
In [PHI Redacted] received proton
radiation for prostate cancer.[PHI Redacted] satisfied
with the results. [PHI Redacted] no major side effects. [PHI Redacted]
walk a couple miles most days with [PHI Redacted] walking
group at work. [PHI Redacted] also use weight resistance
training two to three times a week, and use [PHI Redacted]
Nordic Track ski-machine two to three times a
week.
Before the proton radiation treatment, [PHI Redacted] local
urologist had recommended [PHI Redacted] a second opinion;
radiation or proton radiation since [PHI Redacted]. [PHI Redacted] checked with a local Harvard and
University of Michigan trained MD, radiation
oncologist, who reviewed [PHI Redacted] lab information, but
[PHI Redacted] decided against Thera-Seeds. |
| Commenter: |
Virgil, Schulenberg
|
| Date: |
9/2/2008 10:43:11 PM |
| Comment: |
I just received an email that the CMS has made a
proposal to Medicare to discontinue reimbursement
for proton treatment of prostate cancer. [PHI Redacted]
living proof that this procedure is the BEST. [PHI Redacted]
had the procedure in [PHI Redacted]. While [PHI Redacted]
there, at least 1/3 of the 140 being treated
during that 2-mth period were there because they
had surgery and the cancer came back. Loma
Linda "cleaned" them up.
[PHI Redacted] had an HMO policy which initially said they
would cover [PHI Redacted] treatment as the secondary
insurance but once got to Loma Linda, they
decided not to. To make a long story short, the
Federal Judge decided in [PHI Redacted] favor (after several
contested letters by [PHI Redacted] to their staff
physician who initially said the procedure was
experimental but later rescinded that statement).
Medicare paid 80% and [PHI Redacted] insurance paid $5000.
Had it not been for Medicare, [PHI Redacted] would not have
been able to receive the proton radiation beam
treatment.
Not only do they have a 95% cure rate, the
treatments are painless (lasting 1 min and 45
seconds 5 times a week)and you are not
incontinent, impotent nor radioactive. [PHI Redacted] carried on normal life during the
40 treatments. It''s nearly 7 years now and [PHI Redacted]
PSA is 0.11.
I''ve had several friends who opted for surgery
and yes, the cancer came back.
We''ve had some local doctors open a clinic
specifically for prostate cancer treatment.
Their quote in the local newspaper was "Medicare
covers this treatment better than insurance
companies and we wanted to make sure the $$$$$
came to us".
To date they have built a facility in TX, FL,
Boston, Indiana and Seattle, WA is going to build
one. The medical profession is going to have to
accept the fact that this is a proven treatment
and surgery, chemo, photon radiation or seeds are
not the answer - plus the fact that there is no
guarantee that one is cured after you have
endured such radical treatment.
[PHI Redacted] was diagnosed shortly after [PHI Redacted]
arrived home from Loma Linda and after going to 3
urologists, he asked the third one why they
weren''t telling men about the proton radiation
beam procedure. The Dr.''s comment was "What
would happen to my practice if I sent my patients
1000 miles away?"
Tell me what is more important to the doctors in
the USA?
Please DO NOT take away Medicare''s help to so
many men who are being diagnosed with prostate
cancer.
Virgil D. Schulenberg |
| Commenter: |
Robinson, William
|
| Date: |
9/2/2008 10:55:38 PM |
| Comment: |
I would like to address the issue of discontinued
coverage for Proton Beam Therapy for Prostate
Cancer. I believe it would be a disservice to men
diagnosed with Prostate Cancer. [PHI Redacted] was diagnosed
with Prostate Cancer in [PHI Redacted]. After extensive
research on the available treatments [PHI Redacted] chose
Proton Beam Therapy. There have been studies
showing the effectiveness of the treatment and the
quality of life post treatment.
In [PHI Redacted] case quality of life was very important.
Since receiving the treatments [PHI Redacted] cancer seems to
be gone. [PHI Redacted] experienced NO side effects. There
was no pain, no incontinence, no bladder or rectal
bleeding, no impotence.
The only evidence that points to [PHI Redacted] receiving
Proton Beam Therapy is [PHI Redacted] PSA test results and [PHI Redacted]
personal Physicians reports which show the cancer
is gone.
|
| Commenter: |
Horner, Gene
|
| Organization: |
Los Angeles County Fire Dept. Retired |
| Date: |
9/2/2008 11:08:09 PM |
| Comment: |
I understand that CMS has made a proposal to stop Medicare reimbursement for Proton therapy for Prostate cancer treatments. Why?
Don't prostate cancer patients deserve a chance to receive the best available treatment? Are you looking to cut costs by condemning men to inferior treatments with More severe side effects? If so, you will incur additional Medicare expenditures to treat those severe problems (I know four men who have had surgery and all need ongoing treatments to deal with their incontinence.... two of them have had the cancer recur).Is it your plan to condemn prostate cancer patients to problems for the rest of their lives? Proton therapy is the new "gold standard" in regards to treating this type of cancer.
I am writing my senators and representative in regards to your plan.
Gene Horner ghornerhb@mac.com |
| Commenter: |
smulders, louis
|
| Title: |
EVP |
| Organization: |
Mairita L.P. |
| Date: |
9/2/2008 11:08:55 PM |
| Comment: |
[PHI Redacted] had Proton Beam Treatment for prostate cancer
from [PHI Redacted].[PHI Redacted] was 63
at the time. Treatment was given at the center at
Loma Linda, California. [PHI Redacted] PSA has been below .5
since [PHI Redacted]. There have been no side effects. No
moneys have been spent since treatment was
concluded, other than semi-annual check-ups at
small costs. [PHI Redacted]
[PHI Redacted] also retained excellent bladder control.
The treatment was painless. When adding to the
cost of other prostate cancer treatments, the
cost of follow up care, plus a monetary value for
the pain and the loss of potency and continence,
the beam treatment is probably not all that much
more expensive anymore. |
| Commenter: |
Dudley, Jack
|
| Date: |
9/3/2008 12:05:46 AM |
| Comment: |
|
Dear Sirs:
I am quite perplexed that some wish to stop
Medicare coverage of proton beam theoropy for the
treatment of prostrate cancer. [PHI Redacted] recieved proton
theropy a year ago. [PHI Redacted] PSA was 5.4. The
treatment [PHI Redacted] recieved was in no way a drudgery.
45 treatments were administered over nine weeks.
The beauty of and advantage of proton beam
theropy over all the other options is that NO ill
side efects were encountered during or after the
treatment. The quality of [PHI Redacted] life if anything
was enhanced during the treatment. Since the
treatment [PHI Redacted] PSA has dropped to 2.6 at four
months, and is now at 1.5 after ten months.
[PHI Redacted] kept in contact with many of the 150
patients who were undergoing treatment at the
same time[PHI Redacted]. ALL have reported similar drops
in their PSA, and NONE have reported ANY side
effects from the treatment.
I would urge you that quality of life during
and after prostrate cancer treatment must be a
high consideration when determining whether or
not to fund the treatment. To my knowledge, no
other form of treatment yeilds such a high
percentage of positive results nor such a low
rate of side effects which impair quality of
life.
Please continue the Medicare coverage of
Proton Beam Theropy for prostrate cancer
treatment. It was truly a Godsend [PHI Redacted], and I
would be greatly saddened if men who follow [PHI Redacted]
were to be denied the quality of life [PHI Redacted] enjoy by
having Medicare coverage of this wonderful
treatment stopped.
JCD
|
| Commenter: |
Nygard, Kenneth
|
| Date: |
9/3/2008 12:12:29 AM |
| Comment: |
Re: Proton therapy for prostate cancer.
I am concerned about the campaign to eliminate
Medicare coverage for the treatment of prostate
cancer by proton radiation.
[PHI Redacted] was diagnosed in 2002 with prostate cancer and
obviously was concerned that treatment would be
effective and also allow a normal life after
treatment. [PHI Redacted] read several books, spoke with
people who had various treatments, sought counsel
from various physicians and came to the
conclusion that there were several treatments
that would probably rid [PHI Redacted] the cancer -
none that were 100%. Every treatment had some
side effects but proton therapy is very effective
and allows the quality of life to continue almost
the same as before treatment. What do I mean
when I write "quality of life"? This means [PHI Redacted] did
not fear rectal burning or tissue injury,
incontinence for an extended period, impotence
for the rest of [PHI Redacted] life or other everyday
problems. [PHI Redacted] spoke with others who had various
treatments. Everyone who had surgery suffered
from impotence, all but one had extended
incontinence and recovery from surgery required a
great deal of time. Those who had conventional
radiation suffered from impotence or partial
impotence, some had intestinal bleeding or real
problems with diarrhea, some had incontinence of
varying degress. Seed implants were also troubled
with various side effects.
One of the physicians [PHI Redacted] consulted explained [PHI Redacted]
the 'medical philosophy of doctors'. He stated
that the medical profession is dedicated to
patient survival and in the case of cancer, to
rid the body of the cancer. He indicated
that 'quality of life' after treatment is not a
priority.
[PHI Redacted]
Starting in [PHI Redacted], [PHI Redacted] began proton therapy at
Loma Linda Mediacal University, finishing [PHI Redacted] There have been no symptoms of cancer in
six years and there were/are no side effects -
none! [PHI Redacted]
because Medicare and [PHI Redacted] supplemental insurance
paid for the treatment, the "quality of life"
continues.
[PHI Redacted]the treatment did not cost a lot
more than surgery and certainly was much less
stressful!
As a final comment, [PHI Redacted] asked one of the urologists
why he had not suggested proton therapy as one of
the alternatives available. The answer was, "if
we sent our patients out of state, we would all
probably go broke"!
I wonder if the campaign by physicians to remove
proton therapy from Medicare covered procedures
is motivated more by financial concerns than by
empathy for patients suffering from a potentially
fatal disease.
I hope that "quality of life" will become part of
the criteria when ascertaining what medical
procedures should or should not be covered. |
| Commenter: |
Montgomery, Ron
|
| Title: |
Chemical and Petroleum World Wide Consultant |
| Organization: |
IBM |
| Date: |
9/3/2008 12:32:26 AM |
| Comment: |
I understand that Proton Beam Therapy is being
reviewed by the Governing Medicare Policy board
for elimination of coverage due to spurious
reasons of not being significantly better than
the typical treatment (i.e. Prostate Removal). [PHI Redacted] a recipient of Proton Beam therapy. [PHI Redacted]
treatement occured at the age of [PHI Redacted]. Although [PHI Redacted] had private
insurance, [PHI Redacted] had to struggle to get [PHI Redacted] treatment
covered. [PHI Redacted] able to jsutify this to [PHI Redacted]
private Carrier Blue Cross Blue Shield at the
time in large part due to the fact that Medicare
was covering this treatment. Had this no been
the case [PHI Redacted] would have had to pay out of [PHI Redacted]
pocket fo what is clearly a superior treatment
over surgery. After much study it was clear
[PHI Redacted] that [PHI Redacted] urologists did not give a damn about
surgical side effects like incontenance or
sexual function loss and worse that he was not
up to speed on advanced non invasive treatments.
Also it was clear that Porton Beam therapy had
significantly less treatment side effects and
was able to achieve equal if not superior
efficacy compared to surgery. [PHI Redacted]6 full years past [PHI Redacted] treatment and maintain
a PSA below 1.0 usually .7 to .9. Also, [PHI Redacted]
still able to have adequate sexual function and
have zero side effects with urination etc.
[PHI Redacted]
I am strongly opposed to elimination for
medicare coverage for Proton eam therapy and
strongly feel that this movement to eliminate
Medicare benefits is a marked conspriracy of the
Urologists who rail against this program due to
loss of income an worse sheer hubris and the
well known medical conditioned called "Not
Invented Here". [PHI Redacted] spoken to several
Urologist since [PHI Redacted] treatment and despite y
[PHI Redacted] success tey consisitently stick to
their one and only position of cut cut cut and
lets schedule it tomorrow before the patient
discovers there are options. Losing Medicare
Funding for Proton Beam therapy sentences
thousands of men to serious side effects and
significant loss of "Quality of Life".
Please here my comment and continue to fund
Proton Beam Therapy. |
| Commenter: |
Pacetti, Greg
|
| Title: |
Self Employed builder |
| Date: |
9/3/2008 12:40:00 AM |
| Comment: |
Well this has been a very interesting read.
[PHI Redacted]
[PHI Redacted] Urologist was a surgeon and of course he wanted [PHI Redacted] to get
a Radical here locally with in the next three months. So, much
research was taken on [PHI Redacted]. Prostate cancer seems to be a
very different beast than most other cancers. What [PHI Redacted] learned was
a Urology Surgeon wants surgery and a radiologist wants you to
have Radiation. It seems everyone wants to have good mortality
stats for they''re portfolio and the hell with the quality of life
issues. [PHI Redacted] decision to have proton therapy was based on getting
information from post treatment patients of many different
therapies including Proton Therapy and also there is a good
chance that no treatment is appropriate.
When [PHI Redacted] Dentist spoke [PHI Redacted] about Proton Therapy
it was all over. [PHI Redacted]PSA was well below one and
on a down hill trajectory the last [PHI Redacted] checked and of course with
very minor side-affects. The plumbing still works. [PHI Redacted] still feel for
[PHI Redacted] it was an appropriate treatment decision. One should
interview any medical personnel that have had this treatment.
[PHI Redacted] And there''s plenty data on potential side-
affects from other therapies.
Life is still a gamble nothing is for certain. |
| Commenter: |
wetzel, joe
|
| Date: |
9/3/2008 5:01:48 AM |
| Comment: |
Please continue paying for proton therapy. It is the most logical treatment for many kinds of cancer. |
| Commenter: |
Garrott, Fred
|
| Date: |
9/3/2008 8:06:06 AM |
| Comment: |
I believe Medicare Coverage should continue to
cover Proton Therapy Radiation for prostate
cancer and a variety of other diseases. The
alternative radiation therapys may be acceptable
for physicians and patients who do not have
access to proton therapy. [PHI Redacted] 5th year
since diagnosis and treatment of prostate cancer
with proton therapy. The advantage of proton
therapy and surgery is in the cure plus the
elimination of significant negative after effects.
Also, to my knowledge no one has ever died from
proton treatment. However, a significant number
die from surgury. I know a man in his mid-
fifties who recently had prostate cancer surgery
who had a stroke on the operating table and now
is disabled for life. We often say if it will
save one life it will be worth it. |
| Commenter: |
Lipscomb, Earle
|
| Date: |
9/3/2008 9:25:12 AM |
| Comment: |
Recognizing the conflicting interests of
contributors to this discussion, I comment only as
[PHI Redacted] who did [PHI Redacted] homework
prior to treatment for prostate cancer. I am
convinced of the superior three dimensional
targeting with protons based on physics, and the
resultant lack of collateral damage as evidenced
by [PHI Redacted] absence of ANY symptoms or side effects
during treatment and persisting at 18 months
post-treatment, with all signs pointing to
success. If I can get the same or better cure
rate, and better quality of life, what's not to
like about protons? I only hope that conclusive
comparative studies will soon be completed to
confirm my belief in proton treatment. |
| Commenter: |
Englert, Bernard A
|
| Date: |
9/3/2008 9:32:40 AM |
| Comment: |
[PHI Redacted] 82 year old man in Louisville ,Ky who had
41 Proton Beam treatments in Jacksonville ,Fl. in
[PHI Redacted] and now a PSA reading
of .23 and a lot better quality of life
since [PHI Redacted] prostate cancer is gone. [PHI Redacted] not
have afforded the cost of the treatments without
Medicare coverage as [PHI Redacted] secondary insurance would
not have paid unless Medicare paid first so I
strongly recommend that you re-consider and
continue to allow payment for Proton Beam
patients! Thank You |
| Commenter: |
Pezick, George
|
| Title: |
Mr. |
| Organization: |
none |
| Date: |
9/3/2008 9:39:45 AM |
| Comment: |
Proton Therapy:
[PHI Redacted] had Proton Therapy in the summer of [PHI Redacted] at
Loma Linda, at age 68, with a PSA of 8.4. [PHI Redacted]
thoroughly researched all [PHI Redacted] options at that
time. [PHI Redacted]had no side effects and in good
health seven years later with a PSA of 0.06. I
would recommend this Proton treatment to everyone!
- George
|
| Commenter: |
Kalin, Ken
|
| Date: |
9/3/2008 9:43:34 AM |
| Comment: |
[PHI Redacted] treated in 2oo6 For Prostat cancer at Loma
Linda Hospital in Calif. It was the best
treatment with no down side. It wold be a mistake
to not allow this great treatment for medicare
patients.
Ken Kalin |
| Commenter: |
brown, Dave
|
| Date: |
9/3/2008 9:51:42 AM |
| Comment: |
In 5 months, [PHI Redacted] PSA went from 5.9 to 1.27 as a
result of Proton Therapy. The main advantage of
this treatment is the fact that [PHI Redacted] experienced no
side affects. As we look to the future, less
invasive treatments should be investigated.[PHI Redacted] was
covered by [PHI Redacted] employer's health insurance;
however at [PHI Redacted] current age [PHI Redacted]; it culd have
been a Medicare situation if [PHI Redacted] retired.
Protn Therapy should not be eliminated from
Medicare coverage.
Dave Brown
Vice-Chairman
EWI Worldwide |
| Commenter: |
Christopher, M.D., Robert P.
|
| Title: |
Professor of Medicine (Retired) |
| Organization: |
University of Tennessee College of Medicine-Memphis |
| Date: |
9/3/2008 10:01:38 AM |
| Comment: |
I strongly oppose the elimination of funding for
proton therapy by Medicare. For thirty-three
years, I served as Associate Professor then
Professor of Medicine at the University of
Tennesee College of Medicine. [PHI Redacted] diagnosed
with prostate cancer in [PHI Redacted] and had proton
treatment in 1996. In the nearly 12 years since
that treatment, [PHI Redacted] PSA has remained in the range
of 0.3-0.4. It was 11.6 prior to treatment.
During that 12 year perion, [PHI Redacted] able to
maintain a fully functional lifestyle with no
side effects from the treament. I realize that
[PHI Redacted] experience is anecdotal but through the
newsletter of the proton therapy alumni group, I
have been able review hundreds of similar cases.
It is obvious that those espousing conventional
radiation therapy are beginning to feel the
competition and wish to destroy this treatment
modality for economic reasons regardless of the
obvious benefit to society. The minimal
morbidity and the positive effects on lifestyle
must be considered along with the obvious
effectiveness of proton therapy in making any
decision about future funding. I have reviewed
numerous papers on the topic and the statement
that there are no comparitive studies with older
forms of treatment are not true. While the
effectiveness of proton therapy may be no better
or worse than other forms of treatment, the
difference in lack of morbidity and maintenance
of lifestyle are striking with proton therapy far
superior.
I strongly urge that the CMS take these factors
into consideration and continue to fund proton
therapy. |
| Commenter: |
Goodnight, Michael
|
| Title: |
Engineer / Training Consultant |
| Date: |
9/3/2008 10:05:29 AM |
| Comment: |
re: Proton beam therapy for prostate cancer
As one who has been researching Proton Beam
Therapy, specifically existing facilities, I am
dismayed at the prospect of coverage no longer
being extended to this treatment option for
prostate cancer patients.
As one who has taught a rationale Problem
Solving and Decision Making course for the past
15 years, I used those same methods in looking
at [PHI Redacted] a course of treatment for early
stage prostate cancer. With the evidence of
little to no urinary incontinence (a major
concern among patients) and statistical cure
rates (cNED and bNED) at least as good as
radical prostatectomy, the choice is clear.
This falls into the category of equal benefit
but less side effects and risk, or "duh!, choose
it!"
It also appears to me that those entering early
comments against this treatment have a vested
interest in competing treatment options. But
look at the more recent comments from those with
patient-side experience. If you're researching
an automobile to purchase, who do you believe
more; the manufacturer, the competing
manufacturer, or those who have bought into the
product?
I urge you to continue coverage for this
treatment option for prostate cancer. |
| Commenter: |
Tuggey, Howard
|
| Title: |
Colonel USA Retired |
| Organization: |
None |
| Date: |
9/3/2008 10:08:24 AM |
| Comment: |
Regarding Medicare Payment for Protons
[PHI Redacted]
Nine years ago, [PHI Redacted] was treated for Prostate Cancer
at Loma Linda University's Proton Treatment
Center, in California, started on [PHI Redacted]
and finished on [PHI Redacted]. Each day, the
actual Proton treatment was less than 5 minutes.
Traditional radiation treatments use X-Rays up to
and including “Cyberknife” while protons are NOT
X-Rays, and have the unique capability of being
more precisely controlled for application to the
cancer or benign tumor.
I believe that a decision must be made to allow
and even expand financial support of proton
Therapy by Medicare. [PHI Redacted]
“Market Forces” will come into play as more
Proton Centers are added to the medical community
and cost reductions based increased availability
and changes in the customer base. Protons are the
rapidly growing approach to treat Prostate Cancer
and many other diseases with Protons as below and
should not be denied to anyone.
Protons are the real deal and treats Choroidal
Melanoma, Pituitary, Acoustic Neuroma,
Meningioma, Astrocytoma,Other Brain, Head and
Neck, Prostate, Other Pelvis,
Craniopharyngioma,Orbital, Paraspinal Tumors,
Chordoma/Chondrosacoma, Sarcoma, Other chest,AVM,
Other Abdominal, SNVM, Breast, Lung, & Liver.
Sincerely yours,
Howard J. “Jim” Tuggey
Colonel, DMOR Retired, U.S. Army |
| Commenter: |
rickard, marvin
|
| Title: |
Pastor Bth, Bsl, DD |
| Organization: |
Christian Church |
| Date: |
9/3/2008 10:17:16 AM |
| Comment: |
Alomost 9 years ago [PHI Redacted] had proton radiation
therapy for prostate cancer. [PHI Redacted] free from
cancer today and have continued in [PHI Redacted] profession
during these nine years. Side effects were
minimal and the results phenomenal.
At the time [PHI Redacted] was diagnosed with cancer a good
friend and [PHI Redacted] were similarly
diagnosed. Each of them opted for other forms of
treatment. Each of them has experienced a
return of their cancers. One is holding it at
bay through hormones, complete with hot flashes
and other side effects. The other will
apparently wait it out and let the disease take
its toll. According to my own research, no
treatment for prostate cancer has the long-term
success rate of proton particle radiation |
| Commenter: |
Manning, Richard
|
| Title: |
Ph.D |
| Date: |
9/3/2008 10:20:01 AM |
| Comment: |
[PHI Redacted] was devastated by a diagnosis of prostate
cancer. Initial research revealed a range of
treatments with relatively similar cure potential.
In my detailed research, I read several books,
talked to dozens of prostate cancer survivors and
read several hundred first person accounts of
treatment. My conclusion was that proton beam
therapy was as effective as any other treatment
but with significantly fewer side effects. Two
other observations:
1. The best treatment for you is the one you
choose after doing appropriate research.
2. Everyone you talk to is biased- doctors based
on what they do and patients even more so on what
they did.
Please do not take the proton option away from
future Medicare recipients who are diagnosed with
prostate cancer.
|
| Commenter: |
Neubauer, Donald
|
| Title: |
Retired Elevator Installer |
| Organization: |
none |
| Date: |
9/3/2008 10:29:45 AM |
| Comment: |
[PHI Redacted] was treated for prostate cancer in [PHI Redacted] with Protons and Photons. [PHI Redacted] PSA at treatment
time was 32. [PHI Redacted] 5 years out from treatment,PSA
undectable. Since the time of [PHI Redacted] treatment [PHI Redacted]
had NO side effects. This continues to this day.
I am aware that there are meany treatments
available for PC. I am also aware that most if
not all may have very negative side effects. None
of the men recieveing treatment at the time [PHI Redacted]
treated (about 150)reported any severe side
effects.
I am a 75 year old who promotes Proron treatment
at every opportunity. I will be very upet if it
is made less available. |
| Commenter: |
Greany, Patrick
|
| Organization: |
PDG Consulting |
| Date: |
9/3/2008 10:36:18 AM |
| Comment: |
Two issues have been brought up by others in this commentary that should be addressed:
1) Regarding the concern that proton therapy for prostate cancer has no additional benefit above and beyond conventional IMRT photon treatments, please take into account the recent report from the Harvard Dept. of Radiation Oncology which shows a 50% reduction in secondary malignancies associated with proton treatments as compared with photon treatments. This report follows: _________________________________________________ ____________________ C.S. Chung, N. Keating, T. Yock, N. Tarbell, Comparative Analysis of Second Malignancy Risk in Patients Treated with Proton Therapy versus Conventional Photon Therapy, International Journal of Radiation Oncology*Biology*Physics Volume 72, Issue 1, Supplement 1, Proceedings of the American Society for Therapeutic Radiology and Oncology 50th Annual Meeting, American Society for Therapeutic Radiology and Oncology 50th Annual Meeting, 1 September 2008, Page S8. www.sciencedirect.com/science/article/B6T7X- 4T85W5M-10/2/096f1b7ef9fa2085f4daa917e93c7361) ¡°Background: Compared to photon radiation, proton radiation improves dose distribution to the target and decreases dose to adjacent normal tissues. The most common method of delivering proton radiation involves passive scattering. However, passive scattering produces secondary low-dose neutrons, which may induce late radiation-induced malignancies. The magnitude of second cancer risk in patients treated with proton radiation compared to photon radiation therapy has not been reported to date. Purpose/Objective(s): To quantify the risk of a second malignancy associated with the use of proton radiation therapy compared to photon radiation therapy. Materials/Methods: Matched retrospective cohort study of 1,450 patients treated with proton radiation therapy from 1974-2001 at the Harvard Cyclotron in Cambridge, MA, and patients treated with photon therapy in the Surveillance, Epidemiology, and End Results (SEER) cancer registry. We matched patients by age at radiation treatment, year of treatment, cancer histology, and site of treatment. We restricted the study to patients with ¡Ý1 year of follow-up. The primary endpoint was the risk of a second malignancy in any site after radiation therapy. Results: We matched 503 Harvard Cyclotron proton patients with 1591 photon patients from the SEER registry. 6.4% of proton patients (32 patients) developed a second malignancy, while 12.8% of photon patients (203 patients) developed a second malignancy. The median duration of follow-up was 7.7 years in the proton cohort and 6.1 years in the photon cohort. The median age at treatment was 56 years in the proton cohort and 59 years in the photon cohort. After adjusting for gender and the age at treatment, treatment with photon therapy was significantly associated with an increased risk of a second malignancy (Adjusted Hazard Ratio 2.73, 95% CI 1.87 to 3.98, p < 0.0001). Conclusion: The results of our preliminary analysis indicate that the use of proton radiation therapy is associated with a significantly lower risk of a second malignancy compared to photon radiation therapy. Additional analyses are required, and ongoing close surveillance of these patients is necessary, given the prolonged latency period for the development of second cancers.¡± _________________________________________________ __________________________
2) The other issue being discussed is the issue of neutron production and whether proton treatments at therapeutic doses cause greater neutron production than photon (X-ray) treatments. This notion was dispelled recently by Dr. Harald Paganetti of Harvard University (Mass General Hospital). As clearly indicated in the video at http://www.oncolink.org/tv/astrola/astroplayer.ht ml, Dr. Paganetti shows that IMRT photon treatments actually yield a higher, rather than lower, rate of neutron production than proton treatments under normal conditions.
Intellectual honesty compels everyone concerned to take these reports into account in evaluating the relative virtues of proton treatments vs. photon treatments. As far as costs are concerned, economic cost-benefit analyses should be performed to evaluate long-term costs as it may be shown that proton treatments actually result in lower cost to insurers, including Medicare and Medicaid, than other forms of treatment because of the increased ability to avoid damage to non-target tissues.
Patrick D. Greany, Ph.D. pgreany@ufl.edu
|
| Commenter: |
Otey, Rick
|
| Title: |
Steering Committee Member |
| Organization: |
Us TOO PEORIA |
| Date: |
9/3/2008 10:40:56 AM |
| Comment: |
|
[PHI Redacted] a three year prostate cancer survivor who
received Proton Beam Therapy at Midwest Proton
Radiotherapy Institute in Bloomington, Indiana.
[PHI Redacted] found Proton Beam Therapy to be a God send as
far as cure rate as well as NO SIDE EFFECTS.
Medicare and Medicaid should continue to provide
this treratment option to men with prostate
cancer.
I beleive that if more centers were built that
people would be served as well as with
competition, the cost would decrease.
Thank you,
Rick Otey
|
| Commenter: |
archer, john
|
| Title: |
Vice President[retired] |
| Organization: |
Ashland inc. |
| Date: |
9/3/2008 10:50:22 AM |
| Comment: |
|
[PHI Redacted] completed proton radiaton at Loma Linda
Hospital in California August [PHI Redacted].[PHI Redacted] last follow
up PSA last year was still undetectible.Several
of my friends locally used radiation offered by
the local hospital.One is dead today and I know
he did not feel well in his final months.I also
recommend Loma Linda Hospital because of the care
and attitude of the staff at all levels.Loma
Linda has collected data from [PHI Redacted] on [PHI Redacted] Psa
tests,why don't you ask them for their 10-15 year
data bank.John Archer |
| Commenter: |
Melendez, Eliezer
|
| Title: |
Minister |
| Organization: |
Retired |
| Date: |
9/3/2008 10:50:22 AM |
| Comment: |
[PHI Redacted] was treated with proton beam radiation theraphy
for prostate cancer at the end of [PHI Redacted]
through the month of [PHI Redacted] up to the 15th,
2008,45 treatments in total. [PHI Redacted] follow up
after 4 months of therapy and [PHI Redacted] PSA was 0.054.
No side effects up to now. [PHI Redacted] suffer from
other diseases, no prescribed medications after
treatment, being a 77 year old man. Isn't this a
blessing!
[PHI Redacted] so greatful to received the treatment of [PHI Redacted]
choice with no side effects at all. [PHI Redacted]
Continue with [PHI Redacted] passion of working with children
and youth and [PHI Redacted] spiritual life is connected with
God.
I am in favor of the expansion of the treatments
centers utilizing this technology, and Medicare
coverage. |
| Commenter: |
Hodgdon, Steven
|
| Organization: |
Individual |
| Date: |
9/3/2008 10:51:26 AM |
| Comment: |
RE the proton radiation treatment for prostate
cancer. [PHI Redacted] had the "traditional" treatment of
prostate cancer which was surgical removal of
the prostate along with seminal vesicles and
lymph nodes, and four years after the surgery
the prostate cancer teturned. [PHI Redacted] was all set to
get "conventional" radiation treatments for the
returned cancer and [PHI Redacted] found out about the
possible side affects from this (incontinence
and impotentcy) [PHI Redacted] asked radiologist if there
wasn't a better way to do this. He replied "If
I were you, I would consider proton radiation
therapyit has virtually no side affects". [PHI Redacted]
then researched the facilities that offered
proton treatments, read more about the process
and decided to have the proton radiation
treatments done. I am happy to say that after
two years of having the proton radiation
treatments the prostate cancer is gone (PSA
count is ZERO)and [PHI Redacted] NO side affects.
Furthermore, if [PHI Redacted] urologist had suggested
proton radiation treatments initially instead of
surgery, [PHI Redacted] would have had it done then and
avoided the EXTRA COST of having to go through
the proton radiation when the cancer returned.
There are many [PHI Redacted] who have had the cancer
returned that could have been prevented if
proton radiation treatments had been done
instead of surgery or other methods. Considering
this, the cost of post surgery radiation
treatments multiplied by thousands of cases
makes proton radiation treatments a feasible way
to go. I highly recommend that you retain the
current poicy of having this type of treatment
covered by your program. Thank you for your
consideration and allowing my comments. Steven
D. Hodgdon |
| Commenter: |
Osbourn, Kenneth
|
| Date: |
9/3/2008 11:18:32 AM |
| Comment: |
re: Proton Therapy
[PHI Redacted] a previous proton therapy patient treated for
prostate cancer over five years ago and suffering
no side effects, [PHI Redacted] this this treatment
offers better post-treatment quality of life than
competing therapies. I have several friends who
have been treated with the "gold standard" of
radical prostectomy and every single one of them
has had problems with either incontinence,
impotence and/or severe infections. They find it
hard to believe [PHI Redacted] received [PHI Redacted] therapy and never
missed a single day of exercise or normal daily
activities.
It's interesting that so many negative comments on
this subject are from doctors invested in the
competitive technologies. The success of proton
treatment is evidenced by the rapidly expanding
number of proton centers being constructed.
"Build a better cancer treatment and they will come!" |
| Commenter: |
Carter, Ian
|
| Title: |
Former Chairman & CEO of publicly traded company |
| Date: |
9/3/2008 11:49:11 AM |
| Comment: |
[PHI Redacted] there is no
question in my mind that Proton Radiation Therapy
is far superior to any other form of prostate
cancer treatment. When [PHI Redacted] first learned that [PHI Redacted]
had prostate cancer [PHI Redacted] began research to determine what treatment would be the
most beneficial to in the short term and the
long term. [PHI Redacted] spent hundreds of hours
researching and through all of this research found a bias and lack of information forthcoming
from the medical profession regarding Proton
Radiation. I almost missed finding out about
this treatment until a friend told me about their
experience and their results with Proton
Radiation. [PHI Redacted] was ready to have surgery with a
prominent West Coast surgeon who never mentioned
the alternative of Proton Radiation, although he
advised [PHI Redacted] of every other alterntative to
surgery. The MD's and medical college professors
intentionally ignore Proton Radiation and based
on [PHI Redacted] personal experience it is difficult to
understand why.
The treatment has been around long enough to
prove that statistically it is better than every
other form of prostate cancer treatment with less
chance of long term disabilities such as
incontinence and impotence. At a time in our
lives when the quality of life becomes important
it is incredible that CMS is considering not
paying for Proton Radiation Treatment for
Medicare patients. Men who need this treatment
have paid years of payments toward Medicare and
they deserve to have Medicare pay for a treatment
that is proven to eliminate prostate cancer and
is far superior to any other treatment available
today.
I had one friend who had surgery and he learned
several years later that the cancer was outside
of the prostate and he had to go through severe
chemotherapy and radiation treatment. Had he had
Proton Radiation Treatment there is a high
probability that the ongoing treatment and the
cost of that treatment would have been avoided.
I had another friend who was advised by an MD
that his recommended treatment was to "wait and
see". While he was "waiting and seeing" he died.
Had he had the Proton Radiation Treatment that
could have been avoided. Another friend was
convinced by his surgeon to have surgery over
Proton Radiation. Now he wears a diaper and will
for the rest of his life. His quality of life is
so dismal that in hindsight he wished that
someone in the medical profession had advised him
about Proton Radiation Therapy. There are
thousands of men just like these who were sold by
their MD's on a mediocre treatment for Prostate
Cancer and now their quality of life is
diminished by long term diabilities that could
have been avoided had the medical profession
advised them of the benefits of Proton Radiation
Therapy. In talking to all three of these
friends of mine none of them was ever advised of
the benfits of Proton Radiation by anyone in the
medical profession.
[PHI Redacted]a cancer survivor who knew that there was a
high probability that [PHI Redacted] cancer had gone outside
of the prostate survived because of Proton
Radiation Treatment I can say without reservation
that this treatment allowed [PHI Redacted] to continue [PHI Redacted]
quality of life. After [PHI Redacted] learned what [PHI Redacted] Gleason
reading represented that there was a probablility
that [PHI Redacted] cancer may be outside of prostate
asked surgeon if he could guarantee he would
be able to cut out all off the cancer that was
potentially in and outside of prostate. His
answer was that he could not. Since Proton
Radiation kills the cancer cells not only within
the prostate but also for a large area outside of
the prostate that was enough evidence to
convince that Proton Radiation was far
superior to surgery or any other form of
treatment. had to determine this fact for
it was never brought to may attention by
any medical professional outside of the Proton
community.
While [PHI Redacted] was going through this treatment [PHI Redacted] was
the Chairman and CEO of a public company that
required services. [PHI Redacted] was able to go through
treatment and to continue working without any
break in schedule. It was hard [PHI Redacted] but it
was possible. Surgery could have afforded
this benefit.
The Proton Radiation treatment centers around the
world are maxed out and even if Medicare decides
not to pay for this treatment these centers will
continue to increase in numbers and will continue
to serve men like [PHI Redacted]. The reason being is
that Proton Radiation Treatment is without
question the best form of treatment for Prostate
Cancer and for many other forms of cancer. The
simple fact is that it works. To take the
availability of Proton Radiation Therapy away
from Medicare patients is wrong. Prostate Cancer
patients have paid money for years to qualify for
Medicare and Medicare needs to be their for them
with a treatment for Prostate Cancer that they
know works. Proton Radiation Therapy should be
available to all men not just the ones who can
afford it without Medicare. |
| Commenter: |
Severe, Errol
|
| Title: |
President |
| Organization: |
Aviation Cadet Museum, Inc. |
| Date: |
9/3/2008 12:10:09 PM |
| Comment: |
Proton Therapy: [PHI Redacted] underwent this procedure just
over a year ago. [PHI Redacted] PSA was 17.2 before beginning
treatment,since then it has been checked at 6
month intervals and has been 0.3 both times.
There are no lasting side effects. Everything
works normally, which cannot be said for my
friends who underwent any other form of prostate
cancer therapy.
As far as [PHI Redacted], and any other prostate cancer patient
that underwent this therapy that I have
communicated with, there is no other treatment
nearly as good!
Captain, Delta Airlines (Ret.) |
| Commenter: |
Kohlin, Ronald
|
| Title: |
(Retired) |
| Date: |
9/3/2008 12:18:31 PM |
| Comment: |
PROTON THERAPY for PROSTATE CANCER: [PHI Redacted] was treated
with Proton Therapy in [PHI Redacted]. [PHI Redacted] suffered no significant side effects during
or after treatment, which is more than I can say
many who have chosen other treatment modalities.
Since being diagnosed and treated, [PHI Redacted] spoken
with others who chose IMRT, Brachy therapy, or
surgery, and have found that not only were those
courses of treatment more difficult, but in some
cases recovery was long, painful, and extended.
Issues of incontinence and impotence were also
more common. Issues of "quality of life" are, to
me, more important than cost.
I find it interesting that members of the medical
community who are against Proton therapy for
Prostate cancer are typically practitioners of
some other method of treatment. They don't quibble
about cost when it is they who are collecting the
fee. It is disturbing to me to see that medical
professionals are less interested in the outcome
for the patient and his quality of life, than they
are in ensuring their own income stream.
I would recommend proton therapy for prostate
cancer to anyone based on [PHI Redacted] experience, and that
of others I know who have had the same treatment.
I also base my recommendation on what I know of
the results of other treatments, and the quality
of life issues during and after treatment. It
would be a shame for the best alternative to be
unfunded; I urge you to continue to help provide
the best health care to Americans. |
| Commenter: |
Kinney, Don
|
| Title: |
retired |
| Date: |
9/3/2008 12:27:27 PM |
| Comment: |
[PHI Redacted] had proton radiation ten years ago at 57 years
of age and I can say that without a doubt it was
the best action that [PHI Redacted] could have taken to treat
cancer.
[PHI Redacted] had no negative side effects and [PHI Redacted]
cancer free. Proton radiation in my "un-
professional" opinion is the best treatment for
this type of cancer.
Many of my friend that had other types of
treatment have commented to me - "why didn't you
talk me into proton treatment!" All who have
said this to me have had major side effects from
their form of treatment.
I realise that this information is based upon
personal feelings without the benefit of
professional study, but [PHI Redacted] would have the same
treatment again. |
| Commenter: |
Fancher, Jack
|
| Title: |
Retired teacher |
| Organization: |
Brotherhood of the Balloon |
| Date: |
9/3/2008 12:29:02 PM |
| Comment: |
To begin with, [PHI Redacted] was assured that Medicare would
cover 80% of [PHI Redacted] Proton Therapy costs; they
covered LESS than 50% & [PHI Redacted] paid the balance.
The program is totally successful & was worth
every cent!! Had [PHI Redacted] had to pay the entire bill, would have. This is truly the ONLY non-invasive
procedure available & more such treatment centers
should be in placeSOON!! Why have "the knife"
when it is totally unnecessary!
This would be a dreadful mistake if Medicare
pulls out; instead, MORE Insurance programs
should include & cover expenses for this most
ourstanding, successful therapy.
|
| Commenter: |
Humbert, Sam
|
| Date: |
9/3/2008 1:08:22 PM |
| Comment: |
I have been informed that CMS has made a proposal
to stop Medicare reimburseents for proton therapy
for treating prostate cancer. I would like to
please ask them to reconsider their proposal. [PHI Redacted]
had prostate cancer and after much research and
talking to others that were treated with various
other options [PHI Redacted] chose to have proton therapy. I
believe for [PHI Redacted] it was the only choice to make. [PHI Redacted]
have completed therapy and had first
PSA test and everything is great. Please
remember in your decision making that the
personal feelings of the patient is more
important than only the dollar. A stress free and
illness free treatment is the only way to go for
the patient. Thank you |
| Commenter: |
Cook, Ralph
|
| Date: |
9/3/2008 1:13:14 PM |
| Comment: |
I am concerned about the possibility the Proton
Beam Radiation Therapy is even being considered of
disqualification for payment by the Medicare
Organization.
[PHI Redacted] was diagnosed with prostate cancer and found out
research before selecting a treatment was worth
the time and effort.
Thanks to a friend who discovered the Proton Beam
type treatments and was treated at Loma Linda U.
Medical Center I did more research.
Two urologist suggested treatment of IMRT
radiation but research indicated this was
invasive with the risk of side effects.
The many "side effects" heard about from various
other patients convince to select the Proton
Beam treatments.
[PHI Redacted] received the treatments and was able to talk one
on one with some of the alumni of these
treatments. Several had "no side effects" many had
very minor side effects which were dissipating in
a month or 2.
I am happy to report after treatments at Loma
Linda Medical Center,[PHI Redacted] had very minor side effects
which have sub sided within 2 months.
The impact of Medicare coverage would have made it
extremely difficult to obtain the benificial
Proton treatments as [PHI Redacted] retired on S.S. payments
and a very small pension.
[PHI Redacted] spoke with some other patients while be treated
and they were in a similar situation.
The "negative" comments I find on this comment
page seem to be from health professionals who have
either not done research since the Proton
Radiation Therapy by LLU began in 1991. They
obviously have not read the recent report data
concerning proton therapy by Loma Linda U..
Currently LLU is treating 44 types of cancer with
an excellent success rate and most patients verify
they only had none or minor side effects.
[PHI Redacted] had two episodes of breast cancer and
received photon radiation treatments 2 times and
after 6 years has radiation burns on her chest.
She was very interested in the Proton treated
patients for breast cancer she spoke with while [PHI Redacted]
was undergoing treatments. She was surprised
they only need 10 treatments and they had "no"
side effects.
The bottom line: Medicare should continue to
support this cutting edge treatment of the Proton
Radiation which is so beneficial to many people &
their quality of health. |
| Commenter: |
Shinn, Raymond
|
| Title: |
Retired Executive |
| Date: |
9/3/2008 1:20:57 PM |
| Comment: |
Dear Sirs,
[PHI Redacted] was diagnosed with prostate cancer in June of
[PHI Redacted]. Living in Sun City West, Arizona,a
retirement community, I have many friends who
have had prostate cancer and have experienced a
variety of treatment regimens from radical
surgery, conventional radiation, Chryotherapy,
hormone therapy and wait and monitor. After
talking with many of these friends and
investigating other forms of treatment. [PHI Redacted] elected
proton beam therapy. In March of [PHI Redacted] completed
45 treatments without experiencing any side
effects except for slight fatigue which is now
gone, and most recent PSA was .5. [PHI Redacted]
Comparing [PHI Redacted] experience with my friends and
acquaintances who had other therapies I highly
recommend proton beam. One friend opted for the
wait and monitor system. He eventually died from
prostate cancer.Others are experiencing erectile
dysfunction and or incontinence and or bowel
problems and all experienced negative side
efffects while participating in the original
therapies.
I think quality of life after treatment should be
a factor in determining what treatment method to
select.
Sincerely,
Raymond D. Shinn |
| Commenter: |
Sands, Russell
|
| Date: |
9/3/2008 1:23:20 PM |
| Comment: |
Proton beam therapy cures prostate cancer and [PHI Redacted] the side affects are
minimal. Other therapies also work, but many of my friends have experienced debilitating side affects.
If Medicare doesn't continue to cover the cost, only the wealthy will have access to this
treatment because of its expense. That is extremely unfair.
|
| Commenter: |
Laue, Clarence
|
| Date: |
9/3/2008 2:11:26 PM |
| Comment: |
Proton beam therapy for Prostate Cancer: The notice CMS is planning to discontinue helping with the treatment of prostate cancer by Proton beam therapy is unthinkable. This treatment with little or no side effects has been provided for years with great results and is in demand so that large sums are being spent to construct new ficilities. Workers have purchased insurance(Medicare) most of their working lives to cover such expense and now to have Medicare not cover some of the cost is not treating then in good faith. I urge this objective be reconsidered. |
| Commenter: |
Furlong, Robert (Bob)
|
| Date: |
9/3/2008 2:24:04 PM |
| Comment: |
[PHI Redacted] received Proton Therapy for Prostate Cancer and
had no adverse side effects. I feel that
Medicare should continue to cover this form of
treatment. Initially Proton Therapy may be more
expensive, but in the long run it will be cheaper
due to the fact that most patients that receive
Proton Therapy Treatments do not suffer from the
known side effects caused by other form of
treatment. This is not only beneficial to the
patient, but to Medicare and other forms of
insurance as their overall cost will be less in
the long run as there will not be additional
health problems associated with other forms of
treatments. I feel that receiving Proton Therapy
for [PHI Redacted] Prostate cancer was the best decision that
[PHI Redacted] ever made. I hope and pray that
Medicare will continue to provide coverage to all
of the men that will be diagnosed with Prostate
Cancer in the future. At the present time there
are only 5 Proton Therapy Centers operating in
the country, but there are at least 10 additional
Proton Centers in the process of coming on line
in the near future. As these new centers become
available, the cost of treatment will eventually
go down. |
| Commenter: |
Williams, Ivan
|
| Date: |
9/3/2008 2:29:33 PM |
| Comment: |
In [PHI Redacted], [PHI Redacted] was diagnosed with prostate cancer. [PHI Redacted]
was offered several options for treatment, chose
proton therapy.
The treatments caused no pain or discomfort during
or after the treatments. [PHI Redacted]
Routine follow-up exams and lab tests show no
cancer. Now [PHI Redacted] live a normal life.
I can recommend proton therapy as the best
treatment for prostate cancer.
Medicare helped make [PHI Redacted] treatment possible. |
| Commenter: |
Bradley, USAF (Ret.), Lt. Col. John B.
|
| Date: |
9/3/2008 2:46:10 PM |
| Comment: |
Proton Treatment of Cancer
As an Engineer, with a BS from the U. S. Naval
Academy and an MSIE from Stanford University, CA,[PHI Redacted], I feel I
am well qualified to comment on the mistaken
approach CMS wants to take. The rational is
solely to avoid paying the cost of Proton
treatments instead of using that better treatment
regimen that has far better results for the
Dollar. The cost rational instead of the
patients well being is a cheap shot at cancer
sufferers.
I have seen and read most of the comments
by "Doctors" who have one main goal, make money
from their barbaric methodology of treating
Prostate Cancer. Three percent of all their
touted methods result in absolutely disastrous
side effect to ones quality of life, let alone
the likely hood of reoccurrence of the Cancer.
One example of the many men going though
treatment[PHI Redacted], was a gentleman 45 years
old who had a total radical prostectomy. Guess
what, his cancer came back. I cannot say it was
the result of incompetence on the part of the
surgeon, but that procedure has horrible side
effect. Nerves are cut, yes accidently, by
incompetence, leaving the individual in depends,
or worse and his ability to have a continuing
love life with his wife is gone for good. Is it
worth that chance, no way in hell? That is an
antiquated procedure, which should be ethically
prohibited.
IMRT, although less likely to sever nerves,
photon radiation is a killer in itself. Why, the
radiation goes in one side of the body to the
cancer. It does not stop there but continues out
the other side of the body destroying absolutely
good tissue for no good reason other than making
money by that procedure.
Cryo, Bronco, Radioactive Seeds and the rest are
just as destructive or just an ineffective at the
three percent level or even higher.
[PHI Redacted] had 45 78 gray scale proton radiation
treatments with absolutely 100@ NO SIDE
EFFECTS!!! starting treatment with a Gleason 7
cancer even though the PSA was only 2.0. Can the
other old treatments do that? No way. Sorry
doctors, slice and dice are not for anyone with a
brain. Why is that procedure successful, it is a
matter of physics. The beam is constrained to
the outline of the prostate in [PHI Redacted] case. A 3-D
scan of the prostate is sent to a physics lab to
lathe out the material that constrains the
distance the protons travel as vies separately
from the left and right side of the incoming
radiation. As the depth of the cuts is less
where the beam is to go the farthest without
exiting the opposite side of the prostate, all
energy is expending within the prostate
destroying the ability of the cancer to recreate
itself. Different depths of course a made for
the opposite side, thus ensuring again the
radiation does not leave the prostate. What a
wonderful concept compared to IMRT and then the
Seeds, which have been known to travel to a
patients lungs.
You cannot control the depth of penetration of
photon radiation like one can with protons, that
is pure simple physics.
As for studies on results, the initial facility
at Loma Linda University Medical Center with any
kind of patient handling capability has been
doing this since 1990. They have amassed
tremendous amounts of data relating to incoming
PSA levels versus survival rates as one example.
All one has to do is take off their blinders from
praising ancient technology and get the data from
that university. Two new facilities are up and
running although he Florida center stupidly
bought a cheap Belgian Cyclotron versus a U. S.
Made Synclotron. Why do I say stupid? A
Synclotron goes radioactively cold in minutes not
days like in the Cyclotron. Repairs are made and
the system is usually up and running that same
afternoon. Disturbance to patient treatment is
minimal. That is particularly compounded when
that repair didn't solve the problem. The
Cyclotron again has to wait 2 days before it can
be accessed again. At 150 patients a day,
financial losses are significant as well as being
a detriment to the patients.
Several of my Academy classmates have had
prostate cancer and every one, IMRT, Robotic
Surgery, etc. all have had horrible quality of
life consequences as a direct result of the
procedure.
Why any Hippocratic Oath taking doctor would put
a patient through such hell for the sake of their
making money when there is a magnitude better way
of curing that kind of cancer.
One glaring example of incompetent surgery. The
45-year-old [PHI Redacted] has a wife who
had a tumor on her optic nerve. The surgeon blew
it and severed a facial nerve. Now her left eye
looks upward at a 45 deg angle to the right and
her pretty face is totally distorted on the left
side. Two days before her husband was finished
with his treatment, one gentleman came out of his
last treatment session for exactly the same
problem, tumor on his optic nerve. He was
hollering, I can see, I Can see, as he was swing
this Bola, the physical device that was put
through the lathe to limit depth of the proton
penetration. Not only that, his face had a grin
from ear to ear. You should have seen the look
on that lady's face, and if she would have known
about Protons for treating cancer, she too could
have been saying I can see with a smile on her
face. Such butchery should be prohibited.
In short, do not ever stop funding Proton Therapy
for treating cancer, as not only can it do
prostate treatment, but brain, nerve and other
such tumors without the damage of a slipping
scalpel. A better alternative to Proton therapy,
there is none, the only reason for the old
methods is the entrenched blinded doctors wanting
money for their method without regard to new
technology, and what is really the best treatment
with no side effect on a patients continuing life.
John B. Bradley
Lt. Col. USAF (Ret.) |
| Commenter: |
Halsted, Tom
|
| Date: |
9/3/2008 2:56:34 PM |
| Comment: |
[PHI Redacted] opted for proton therapy because, in the absence of clinical
trials, [PHI Redacted] became convinced through experiential data and
anecdotal evidence obtained from dozens of personal interviews
with patients and practitioners that proton therapy would
provide with the fewest side effects. [PHI Redacted] had a dramatic
drop in PSA and no side effects whatever, which makes [PHI Redacted]
yet another satisfied proton customer. Naturally, [PHI Redacted] was also
greatly influenced by the fact that unlike IMRT, protons would
expose far less healthy tissue to radiation damage. Any patient
presented with the option between the two would choose
protons if it were available. Access to this relatively benign,
successful therapy should certainly not be restricted to wealthy
cancer patients alone.
Rather than criticize the proliferation of proton facilities,
skeptics might consider the cost savings that will inevitably
result as treatment regimes involve fewer, stronger, doses, and
collateral damage is diminished through the use of more precise
patient positioning and tumor localization techniques. |
| Commenter: |
Miller, Bruce
|
| Title: |
Retired |
| Date: |
9/3/2008 3:31:27 PM |
| Comment: |
| My comment is in regard to Medicare considering
no longer providing coverage for Proton treatment
to prostate cancer patients.[PHI Redacted] completed Proton
treatment three years ago having been diagnosed
with that condition. [PHI Redacted] not experienced one
single noticable side effect since the conclusion
of series of forty four Proton treatments. [PHI Redacted]
recently underwent a colonospsy that showed there
was no evidence damage to intestinal tract. To
remove Proton treatment from the Medicare
choices of coverage for those diagnosed with
prostate cancer would deprive thousands of
american men of obtaining the single option of
them continuing to live a quality life of
normalacy following prostate cancer treatment. I
am a veteran of the United States Navy , a
retired police lieutennant with a degree in
criminal justice. [PHI Redacted] did not choose Proton
treatment without first giving consideration to
all existing options for prostate cancer
treatment. Please totally compare the existing
options and rule in favor of keeping Proton
treatment as a covered procedure under the
Medicare program. All American men should have
the option of selecting Proton treatment as a
viable option among the numerous choices
currently offered for treatment of prostate
cancer.
Thank You, Bruce W. Miller |
| Commenter: |
KLUGE, PETER
|
| Title: |
member |
| Organization: |
Brotherhood of the balloon |
| Date: |
9/3/2008 4:34:28 PM |
| Comment: |
I am more than a little disturbed that medicaid or medicare are
being advised to discontinue coverage of proton radiation therapy
for prostate cancer. The urging seems to come from other
professionals who offer competing therapies. [PHI Redacted] I can see why; it works better than any other
form of treatment available today. It is a little more expensive than
other treatments at this time, but this is changing; more facilities
are being built and the use of the technology is expanding. All I
can say is, that the results are worth every penny spent. |
| Commenter: |
Jensen, Donald
|
| Title: |
Retired Pilot |
| Organization: |
American Airlines |
| Date: |
9/3/2008 4:48:51 PM |
| Comment: |
It has come to my attention that some powerful
forces are trying to stop Medicare and Medicade
funding for Proton Radiation treatment for
Prostate Cancer.
I don't know what their motives are but their
efforts are certainly very regretable. [PHI Redacted]
recieved treatment at Loma Linda Medical Center
for Prostate Cancer. The results were
phenominal. [PHI Redacted] PSA is now 0.03. Digital exams
show very positive results. [PHI Redacted] no side
effects from this treatment. About one year post
treatment [PHI Redacted] did have some rectal bleeding. That
is cured and caused no problem. Know many folks
who had other type treatments. None had as fine
an outcome as [PHI Redacted] experienced.
When you look at cost you should look at all cost
including extra hospital stays, various morbidity
issues, etc.
[PHI Redacted] treatment was funded by Medicare as it should
be. [PHI Redacted]
We don't need those who want to push their
favorite program to kill one that has immense
value. |
| Commenter: |
Horwitz, Harold
|
| Title: |
Retired/Inactive Attorney |
| Organization: |
California State Bar; ABA |
| Date: |
9/3/2008 5:31:54 PM |
| Comment: |
[PHI Redacted]82 years old and in excellent health, which
[PHI Redacted] attribute primarily to Proton Beam therapy at
Loma Linda University in [PHI Redacted]. Prior
to that time, [PHI Redacted] had been dianosed with prostate
cancer and you are welcome to review [PHI Redacted] then
current condition, along with the treatment
modalities.
However, prior to undertaking treatment at Loma
Linda, [PHI Redacted] interviewed Medical professionals
(Doctors) in competing technologies in search of
the best treatment with fewest negative
problems, without regard to cost or
inconvenience of treatment location. Without
exception, Doctors in competing technologies
always recommended their specialty as being
superior.
[PHI Redacted] was fortunate in having a technical (BS-
Physics/UCLA) as well as a legal background (JD-
WSU) which allowed [PHI Redacted] to evaluate the various
approaches to ameliorate the cancer.
[PHI Redacted] now 8 years post treatment and have no side
effects from the treatment.
I urge a careful study, in addition to the
negative remarks from professionals in competing
technologies, before you discontinue the
remarkable treatment now available at Loma Linda
and other facilities.
Two interesting commentaries follow:
(1) When [PHI Redacted] evaluated the various options to
treat the prostate cancer, [PHI Redacted] was fortunate
enough to interview a well-known MD/Professor at
a renowned institution for his advice. He
recommended Proton beam therapy, although it was
not offered at his institution.
(2) Before [PHI Redacted] had heard of Loma Linda Proton beam
center, had heard of MD Anderson treatment
center and almost traveled there for surgical
removal of the prostate cancer. However, [PHI Redacted] was
shocked to learn that they would not treat because of age. At that time [PHI Redacted] was 74. They
told [PHI Redacted] that they were not accepting patients
over 65!
To sum up, [PHI Redacted] very positive results from experience at Loma Linda and urge you to not
eliminat this treatment as it has saved [PHI Redacted] life
and other lives of similarly treated people.
Sincerely,
Harold C. Horwitz
|
| Commenter: |
Wright, Thomas
|
| Title: |
Retired |
| Date: |
9/3/2008 5:41:47 PM |
| Comment: |
|
I think it would be a grave error to not fund proton therapy for
prostate cancer. [PHI Redacted] I can attest to the fact that it
is the best treatment available. [PHI Redacted] |
| Commenter: |
Rehkemper, Alan
|
| Title: |
Medicare Reimbursement for Proton Radiation |
| Date: |
9/3/2008 5:47:51 PM |
| Comment: |
[PHI Redacted] received proton radiation treatment during
[PHI Redacted], and very satisfied
with the results: no incontinance or impotence,
no pain during treatment, and presently a PSA
level below 1.0.
[PHI Redacted] also had
prostate cancer. One [PHI Redacted] died of
prostate cancer in 2006. [PHI Redacted] treatment was
reimbursed by Medicare and Tricare [PHI Redacted].
Please continue Medicare reimbursement for this
highly effective treatment with no painful side
effects. |
| Commenter: |
Owings, Allen
|
| Date: |
9/3/2008 6:40:01 PM |
| Comment: |
[PHI Redacted] experienced proton beam
radiation therapy treatment for prostate cancer,
and can honestly say that the side effects, with
the exception of minor urinary discomfort, were
basically non-existant. After nine months [PHI Redacted] PSA
droppped to 1.7 from 7.5, urine function is
normal and sexual functions remain good. [PHI Redacted]
fellow patients share the same views. At first
[PHI Redacted] Medicare Advantage plan would not approve
proton therapy, but appeal was later upheld.
[PHI Redacted] was determined not to settle for anything
less. I strongly urge Medicare to continue their
coverage of proton therapy treatment for prostate
cancer so that others diagnosed with this illness
can have the same opportunity. |
| Commenter: |
White, Steven
|
| Date: |
9/3/2008 6:46:32 PM |
| Comment: |
[PHI Redacted]
I had [PHI Redacted] who had surgery and had
considerable discomfort and incontinence for the
rest of their lives. One had reccurance of
cancer which caused his death. Also, [PHI Redacted] had surgery about 8 years ago, his PSA is
going back up now. He has had incontinence and
depression and other problems related to that
treatment.
While it is true that other modes of treatment
are cheaper initially, if you consider recurring
medical costs and suffering, as well as loss of
function and quality of life, the Proton Therapy
seems to be a much safer and better method of
treatment to me.
It seems a shame to me that some doctors who
provide other forms of treatment often want to
discredit Proton Therapy. Of the dozens of
fellow patients that I became acquainted with in
Florida, all seemed thrilled to be there and to
have found that method. Many had stories of how
their doctors at home had called Proton
Therapy "experimental" and discouraged them from
doing it. Yet nobody that I met had any
incontinence or impotence when they were done.
The call to have more studies is valid. I hope
accurate data can be compiled to compare the
various treatment methods. From [PHI Redacted]
experience, my guess is that Proton Therapy will
show to be far easier on the patient, with better
long term sucess.
I hope Medicare doesn't decide to quit funding
Proton treatment. I'm sure it is a superior
treatment for certain brain and spinal tumors as
well. [PHI Redacted]. |
| Commenter: |
Young, Barbara
|
| Date: |
9/3/2008 6:50:26 PM |
| Comment: |
I am not a doctor or a nurse or medical
practitioner of any kind. So, I feel like I'm
battling the Goliaths (Doctors) who have already
addressed this topic: - Proton Therapy for
Prostate Cancer- here in this comment forum.
Their education, knowledge and years of
experience seem to carry a lot of weight no
matter who's reading these comments and many of
them (that I've come into contact with) seem to
want to be crowned immediately. I'm just a
[PHI Redacted] of a [PHI Redacted] with prostate
cancer who would like to see Medicare leave the
choices for treatment of prostate cancer up to
the person whose life and well-being are at stake.
I know 2 other men who have prostate cancer and
who have both been treated with seed implants.
Both have and, in at least one case, are still
experiencing much discomfort from the procedures
they had done (in different parts of the USA).
[PHI Redacted], on the other hand, who had Proton
(and Photon) treatments, NEVER once experienced
any problems whatsoever and 2 years after
treatment has a PSA of .01. Luckily, [PHI Redacted] had
private insurance, but if [PHI Redacted] had been a
little older, would be relying on Medicare.
I would like to think that Medicare would pay at
their normal rate no matter what treatment a
person chooses. Maybe some facilities are better
than others at providing this Proton treatment.
Generally speaking, so are hospitals and
doctors. It's up to the consumer to choose the
best according to their judgment.
Why would Medicare want to get into
the "doctoring" business by dictating what kind
of treatment a person should get? Unless someone
can prove that Proton Therapy is a TOTAL waste
(which no one has argued), the proliferation of
negative comments point to a kind of egocentric
envy. |
| Commenter: |
Fitzner, Dale
|
| Title: |
Professor (Retired) |
| Date: |
9/3/2008 6:51:22 PM |
| Comment: |
[PHI Redacted]I am amazed that Medicare would
consider removing this effective prostate cancer
treatment from its payment list! [PHI Redacted], along with
the thousands of other prostate cancer survivors
who were cured by proton beam therapy (without
the side effects of incontinence, impotency and
cancer reoccurance associated with other prostate
cancer treatments) over the past 15 years that
proton therapy has been approved and provided
would be very concerned about future prostate
cancer patients not having the proton beam
therapy option.
The negative comments/critiques I have read in
these public comments seem to have come from
individuals in the medical field whose livelihood
depends on the income they derive from providing
treatments other than proton beam therapy!
Comments from those sources should be suspect!
Taxpayers should be concerned that, if Medicare
does not provide payment for the proton beam
treatment for men in the future who have prostate
cancer, they will be paying taxes to provide
medical treatment to deal with the side effects
that often result from prostate treatments other
than proton treatment. We all know men who have
suffered impotency, incontinence and cancer
recurrance after surgery or radiation seeds.
Compare the side effects/after effects of
prostate cancer patients treated with proton
versus other prostate cancer treatments. Don''t
allow proton beam tharapy to be derailed by
professional jealousy or greed!
Dr. Dale Fitzner |
| Commenter: |
Hopkins, Philip
|
| Date: |
9/3/2008 7:02:32 PM |
| Comment: |
[PHI Redacted] received the proton treatment for prostate
cancer last year. [PHI Redacted] had no adverse problems
from this treatment. One year after the treatment
[PHI Redacted] had two PSA tests. The first was 1.4 and
the second was 1.1.
[PHI Redacted] more that satisfied with the proton
treatment and would recommend it to anyone who
has prostate cancer. There was no discomfort as [PHI Redacted]
had the treatments.
Some of my friends who have had other forms of
treatment, including regular radiation have had
severe problems after those treatments.
I request that you nor take proton teatment from
your list of approved treatments for prostate
cancer.
Thank you,
Phil Hopkins |
| Commenter: |
Teague, Gayle
|
| Date: |
9/3/2008 7:57:40 PM |
| Comment: |
Five years ago [PHI Redacted] let doctors talk [PHI Redacted] into surgery
to try and get rid of prostate cancer. [PHI Redacted]
been incontinent for five years now and the
cancer has come back. [PHI Redacted] just finished
proton radiation therapy and PSA is on the way
down.
The five years [PHI Redacted] lived with incontinence
could have been avoided and could have been
free of cancer five years ago with no side
effects. If only the six doctors [PHI Redacted] consulted had
told about Proton Radiation Therapy. Proton
Radiation Therapy is painless and free of side
effects. I have talked face to face with at
least 30 men who have been cured for one to five
years after treatment, and they still have no
side effects. What more could one ask?
[PHI Redacted] disgusted with the doctors have consulted
with this problem. Initially, [PHI Redacted] doctors did not
even mention the proton option. After [PHI Redacted] mentioned
it they get angry and won't discuss it, or they
deny knowledge of it. I have had men tell me that
their doctor just left the room and didn't
return, or would not return phone calls after the
patient mentioned proton therapy, or told the
patient to find another doctor. I believe they
are afraid they will lose business. It's
obviously about money. What happened to "do no
harm?" Gayle Teague |
| Commenter: |
Hebbard, Le Roy B., Jr.
|
| Title: |
Captain US Navy ( ret.) |
| Date: |
9/3/2008 8:24:08 PM |
| Comment: |
[PHI Redacted] I believe the
cestation of payment for Proton Beam Therapy for
the treatment of Prostate Cancer would be a huge
mistake. [PHI Redacted] thoroughly researched the different
forms of cancer treatment availbale, when diagnosed. The absolute deciding factor for [PHI Redacted]
after consulting with patients who had been
treated with proton beam therapy versus those
treated with normal xrays, surgery, and hormone
treatment, was the apparent almost total lack of
side effects associated with proton beam therapy.
Listening to the tales of major life impacting
side effects from other patients not treated with
Proton beam therapy, convinced [PHI Redacted] to opt for
that treatment. [PHI Redacted] enjoyed a completely
normal life style afer completion of treatment.(2
1/2 yrs)
I strongly second the comments made by Prof.
Peter Vollhardt (9-2-08). His comments regarding
the Bragg Energy Peak are particularly pertinent.
In my opinion the treatment may be expensive, but
please remember , " you get what you pay for".
Le Roy B Hebbard, Jr
Capt USN retired |
| Commenter: |
Darling, Eugene F.
|
| Title: |
Retired |
| Date: |
9/3/2008 8:32:41 PM |
| Comment: |
[PHI Redacted] received Proton therapy last fall. [PHI Redacted], and
felt that the treatment much was much less
invasive then regular radiation treatment. [PHI Redacted] was
considered a high risk patient, with a Gleason
score of 7 and a PSA of 10.7. Almost a year
following treatment [PHI Redacted] PSA is still 0.0.
I have talked with patients that had general
radiation and their side effects have been more
dramatic then [PHI Redacted] or other Proton treated
patients that I have talked with.
Many of the patients receiving Proton treatment
[PHI Redacted] were also receiving Medicare[PHI Redacted], but it was interesting to note that their
were also many younger patients receiving Proton
treatment because it was considered the better
treatment to receive.
Sincerly,
E.F. Darling |
| Commenter: |
Murphy, Thomas R.
|
| Organization: |
Private Citizen |
| Date: |
9/3/2008 9:04:31 PM |
| Comment: |
[PHI Redacted] was diagnosed with prostate cancer in 2006, at
age [PHI Redacted]. Testing established that [PHI Redacted] was otherwise
in good health.
I bagan my own research, interviewing many
doctors, representing many treatments, from
traditional surgery to robotic (DaVinci method)
surgery, to the newest types of traditional
radiation (photon)and seed implants. I found each
of them encouraged their own specialty
as, "proven the best".
I also interviewed many men who had been through
those various treatments. Most had unfortunate
side effects. Some would even qualify their
treatment as not successful.
I was quite discouraged, until I was told about
Proton Therapy treatments by a nationally
recognized oncologist who had treated prominent
persons in Washington DC. While he did not
administer proton therapy himself, he told me it
is unquestionably the best treatment for prostate
cancer. I spoke with him personally, as he is
related to a personal friend I have known for
years.
After [PHI Redacted] proton therapy was completed in [PHI Redacted], PSA dropped from a pre-treatment reading
of 13 as a high, to 1.27 in 6 months, then .08 in
one year. In addition, ALL SYSTEMS WORK!
Since then, I have spoken with men who have had
various treatments, as well as many others who
have had proton therapy. By this measurement, In
my judgement, proton therapy is by far the
safest, most effective treatment, with little or
no side effects. It would be immoral to eliminate
this therapy from Medicare's approved list.
Thomas R. Murphy |
| Commenter: |
Test, Sandra
|
| Date: |
9/3/2008 9:48:10 PM |
| Comment: |
[PHI Redacted] went thru the protron treatment at
Loma Linda Medical Center in CA. Please, please
don't listen to urologists, most of whom don't
recomend or understand proton treatment and are
only looking out for themselves and their pocket
books bcause they do sugery not proton radiation
treatment. Patients do not go thru any pain or
recovery time or the primary side effects that
surgery patients do. Radical prosectomy surgery
always results in incontinance short term,
sometimes permenently and always experience a
total loss of sexual potency, that means no
erections or orgasums ever again with or without
drugs. Does this sound like a comparable
treatment to you? No!!!!! Proton radiation almost
never results in incontenance and over 70% of
proton radiarion patiants can still have sexual
potency with and without drugs like viagra. The
costs of proton radiation will come down in time
as more facilities come on line. The American
Cancer Society approves this process and so
should everyone else. The statistical survival
rate of proton radiation treatment collectively
has improved over time and is equal to or better
than surgery today and is the future for treating
this form of cancer and many other forms of
cancer. You need to research this more before
making any decisions that could affect future
patients with prostrate cancer. Go to Loma Linda
and talk to the staff there and get the
statistics and the facts - PLEASE.
|
| Commenter: |
Flygare, Gordon
|
| Date: |
9/4/2008 1:32:17 AM |
| Comment: |
My experience with Proton Therapy for the
treatment of prostate cancer is that there have
been NO side effects during or following
treatment.
There have been no continence or bowel control
problems and no erectile function effects. No
pain or discomfort at any time.
During treatment, [PHI Redacted] needed no "Care Giver" at
any time.
Following the proton treatment there was no
recovery time and [PHI Redacted] was 100% ready to resume normal activities the day returned from
treatment.
I don't think other therapies can begin to
compete with Proton Therapy's lack of adverse
impact on the patient's life during or after
treatment. |
| Commenter: |
Alwert, Dave
|
| Date: |
9/4/2008 2:21:13 AM |
| Comment: |
I am writing this comment on Proton Beam
Radiation treatment for prostate cancer as [PHI Redacted]. [PHI Redacted] last treatment was on [PHI Redacted] and most recent PSA, taken on
[PHI Redacted], was .28. I have had several friends
undergo just about all the other treatments
available and I have been able to compare not
only the results of the cancer treatment, but
also the resulting side effects of the treatment.
Without exception [PHI Redacted] quality of life side effects
have been superior to the other treatments, this
is easy [PHI Redacted] to say as [PHI Redacted] have not suffered any
side effects at all. Since defeating prostate
cancer is the goal of all treatments and the
information that I gained through research before
selecting treatment told [PHI Redacted] that all
treatments will be effective if the cancer is
caught early and has not escaped the prostate,
what is left is the quality of life after
treatment. If you read of all the possible side
effects that prostate cancer patients can suffer,
I belive you would want for yourself the
treatment that leaves you with a quality, normal
life!
I would therefore submit that Proton Beam
Treatment should continue to be paid for through
medicare |
| Commenter: |
DeMailly, Jr., Charles
|
| Title: |
retired |
| Date: |
9/4/2008 9:16:07 AM |
| Comment: |
[PHI Redacted] was diagnosed with prostate
cancer and chose proton beam therapy treatment
after carefully examing all available treatments.
I strongly believe this treatment is superior to
alternative procedures; especially when I compare
the outcome with friends and acquaintances who
have chosen alternative options.
With Proton Beam Therapy you have no lost working
time, no incontinents regarding sexual activity
or inability to restrain a natural discharge such
as urine, no scars, and no pain. [PHI Redacted] biopsy was
much more invasive than the prodedure.
[PHI Redacted] PSA is down to .4
Anyone who would like to hear more - give me a
call. |
| Commenter: |
Kippley, John
|
| Date: |
9/4/2008 10:52:38 AM |
| Comment: |
Proton treatment for Prostate Cancer
The value of Proton Beam treatment for prostate cancer appears to be beyond dispute if patient satisfaction with the lack of side effects counts for anything.
The value of the proliferation of Proton Beam treatment centers is an entirely different issue. Is there a health need for two such treatment centers just west of Chicago? or two in Oklahoma City?
Is there anything that the Federal government can do to restrict the number of centers without in effect giving a monopoly to the ones permitted to be built and operated and funded with tax dollars?
The best answer to skyrocketing treatment costs is prevention. Two papers published in JAMA in 1993 found a statistical relationship between vasectomy and subsequent prostate cancer. Among men who had vasectomies for more than 22 years, there was an 85% increased risk. Should Medicare restrict or reduce its prostate cancer funding for those who have voluntarily had a vasectomy and subjected themselves to this risk?
Such logic would require its application to other areas of tax-supported health care. If done gradually and with compassion for ignorance, this might be the greatest step the federal government could do to reduce the incidence of self-induced disease.
|
| Commenter: |
Karlstrum, Delmar
|
| Date: |
9/4/2008 10:53:34 AM |
| Comment: |
I am very diappointed to hear that CMS has
proposed to stop Medicare reimbursements for
Proton Therapy for treating Prostate Cancer.
[PHI Redacted] was diagnosed with Prostate
Cancer. [PHI Redacted] PSA 7.0 Gleason of 5.0. [PHI Redacted] recieved
Proton Theraphy in [PHI Redacted] with the help of
Medicare. [PHI Redacted] had no side effects, Cancer is
gone, in [PHI Redacted] PSA is 0.02. [PHI Redacted] healed
and feel great at age 79. I feel sorry for any
man who has Prostate Cancer and is denied
treatment because Medicare will not help with
payment. It is the best treatment for Cancer a
man can get. |
| Commenter: |
Price Jr., M.D. F.A.C.S., joshua e
|
| Title: |
Board certified Surgeon |
| Organization: |
American citizen,USA veteran. |
| Date: |
9/4/2008 11:28:42 AM |
| Comment: |
[PHI Redacted] treated for advanced prostate cancer at LLU s proton
treatment facility and cured. [PHI Redacted] PSA went from 34 to less
than0.9. [PHI Redacted] disease fre 4 yrs after treatment.
[PHI Redacted] not had to be treated with expensive proceedures to deal
with complications and side effects.
Proton therapy is VERY cost effective. Not covering the treatment
option would be shameful and lead to more expensive treatment
options,not to consider the guality of life issues.
How dare you consider not provideing coverage of this proceedure!
We will not stand for it!!!!!!!! YOU will be the ones that GO!!!!! |
| Commenter: |
Gershon, Robert
|
| Title: |
Retired Information Technology Professional |
| Date: |
9/4/2008 11:30:07 AM |
| Comment: |
During a routine examination, [PHI Redacted] family doctor
noticed a small rise is PSA 2.7 to 3.7 in a 12-
month period. To be on the safe side, she
referred [PHI Redacted] to an urologist. A biopsy was taken
and the results were t1c and a Gleason of 3+3 =
6. For various reasons, [PHI Redacted] chose Proton Therapy.
It has been three weeks since [PHI Redacted] completed the 45
proton treatments. The treatment was painless
and [PHI Redacted] experienced no side effects. |
| Commenter: |
Stytz, Jeffrey
|
| Date: |
9/4/2008 11:36:42 AM |
| Comment: |
Proton beam therapy for prostate cancer.
The call came on Friday, [PHI Redacted]. This is Dr. XX
calling with your biopsy results the voicemail
said. When he heard this he knew it probably
wasn’t good news. Doctors never called before,
it was always the nurse or the office with test
results. Eventually reaching the doctor hours
later, the fear was confirmed. “There is an
adenocarcinoma in the left base involving one
core with a Gleason score 3+3=6.” “It appears to
be localized, but we don’t know for
sure” “. ”Call my office and schedule a
prostate cancer consultation for Monday”. As he
hung up with the doctor, the knot in his gut was
a lot harder and bigger all of a sudden. He
turned to his wife and said simply “I got it” and
walked out of the room.
All the time, he was suppressing the memories of
seeing his grandmother crying when her son, his
uncle, was dying of cancer years ago. Although
he was a young boy and didn’t understand all what
was going on, he knew it must be pretty bad for
his grandmother to be so upset. Here was a woman
who raised 13 children baking bread and making
dinners on a wood burning stove; never a
complaint and never a harsh word. How cruel it
was years later for her to die of the same cancer
that took her son. He could remember her
screaming and his Dad and his aunts and uncles
crying when they went to see her. The doctor
explained it was cancer and the only thing he
could do was to try to ease her pain with drugs.
The cancer had spread and she was dying.
So these memories and memories of other aunts and
uncles dying of cancer started a panic he tried
to suppress. Cancer was always a death
sentence. No one knew how it happened and, years
ago, people stayed away from people dying of
cancer for fear it might be contagious. Sounds
somewhat primitive, but that is how people
thought years ago.
[PHI Redacted] People get calls like this
every day with worse news. What is a prostate
anyway? How important is it? I guess it could
be removed, no big deal. Let’s go on the
Internet and do some research. I have all
weekend and I should be able to find some answers
before Monday.
As he researched the disease, there was a lot of
information to take in. What a prostate is, what
it does, where it’s located and treatment
options. So he did what he always did when
facing a problem. Identify the issues, find the
solutions and put the data in a spreadsheet. It
also helped keep his mind focused away from the
bad memories and the “superstitions” of cancer.
Using the internet as a resource, he was
accumulating a tremendous amount of information;
radical prostectomy, laparoscopic surgery, nerve
sparing da Vinci prostatectomy, external beam
therapy, intensity modulated radiation therapy,
3D conformal radiation therapy, low dose or high
dose seed implant radiation, cryosurgery, hormone
therapy and proton therapy. He decided to sort
the data by procedure, advantages, disadvantages
and of course survival rates.
As he built his spreadsheet for Monday’s meeting,
the side effects and post treatment statistics
for surgery and radiation therapy were quite
depressing. It seemed that he was going to have
to deal with issues of incontinency and impotency
as well as cancer. The chances of one or both
happening seemed a given. However, the one
treatment called proton therapy seemed to offer
cure rates similar to surgery with less side
effects than the other radiation therapies and
less likelihood of incontinency and impotency.
He decided to ask his doctor about it on Monday
and see what he would recommend. So on Monday he
asked the doctor, “What would you do if you were
me?” The doctor recommended daVinci
prostatectomy or seed therapy. “Given your age
of 53, you are a good candidate for either one.”
What about proton therapy he asked? It seems to
offer a cure rate similar to surgery but with
less chance of side effects as well as less
chance of incontinency and impotency. The
doctor was somewhat familiar with proton therapy,
but it wasn’t a topic covered in as much detail
as other procedures when he was in medical
school. By the time the consult was completed,
there appeared to be four choices, daVinci
surgery, seed implant, watchful waiting and
proton therapy.
He knew he would need to tell his family and
friends what was going on so he called a number
of them over the next few days and gave them the
news. It’s somewhat curious how telling someone
you have prostate cancer leads to others telling
you of a father, grandfather, uncle or brother
who had it and were doing fine years later. When
he asked if anyone of them had proton therapy,
all said no. They had surgery or radiation,
never heard of proton therapy. In speaking with
the men who had surgery or radiation, the details
were a little different. Yes, the cancer was
gone but there were some other things gone as
well. In one on one conversations, it was
revealed that there were still problems with
incontinency and of course impotency. The
incontinency was better though, as many were
using only one or two pads a day not five like
they had been. Their sex life was more
regimented than they would and some men needed to
inject Viagra directly into their penis. “Be
sure you are going to have relations with your
wife as you don’t want to do this on a whim” was
one comment. Not good. All the talk of being
better seemed to have an air of avoidance or
resignation of the issues so tightly tied to
being a man.
Time to talk to the proton therapy candidates and
see what the true story was here. He couldn’t
believe what he was hearing, and not just from
the younger men, but older men as well. There
were some issues during treatment, but they were
short term. Not only was there no significant
side effects during treatment, there seemed to be
no long term side effects. This can’t be right
he thought. How can you have treatment for
cancer and not experience problems or side
effects? He also talked to men who had surgery
or hormone therapy that were undergoing proton
treatment currently to eliminate the last bits of
the cancer.
More and more he was convinced that proton
treatment was the best way for him. It seemed to
offer the benefits of surgery with the least risk
of short term and long term side effects or
diminishment of quality of life. It wasn’t the
case of avoiding pain, though no one likes pain.
It was more of a sense of logic and elegance that
proton therapy could treat the disease, targeted
to the specific area of concern and leave all the
healthy tissue untouched. It seemed like to him
using a specific tool for a specific job unlike
the other options that seemed like using an
elephant gun to kill a mosquito.
So he went for a consult and found he was a
viable candidate for proton therapy and started
down the road. Pod forming, CT scans, marker
implant and virtual simulation all led to first
day of treatment many days ago. Not once have
there been any regrets or worry and the feeling
of being cured and feeling blessed and lucky to
have this treatment available are overwhelming.
There is a sense of sadness for all the other men
who could have benefitted from this treatment and
didn’t know about it. But there is a sense of
hope and optimism that, for all the men who
choose proton therapy, they will tell others.
They will provide the first hand information and
understanding to help more men deal with the
issue of prostate cancer with a sense of hope,
dignity and quality of life. |
| Commenter: |
Maggio, Ted
|
| Date: |
9/4/2008 12:02:38 PM |
| Comment: |
When [PHI Redacted] was diagnosed with prostate cancer with a
PSA of 7.0 and a 7.5 Gleason Index, investigated options. I talked to many men
who had surgery or regular radiation. They all
had similar side affects, i.e., incontinence and
impotence for several years following treatment.
[PHI Redacted] chose proton radiation because of no side
affects combined with it's very high cure rate.
Eight years later [PHI Redacted] cancer free. If Medicare
had not approved proton radiation, could not
have afforded the treatment. Since [PHI Redacted]
treatment, I have told eight men who had prostate
cancer and also opted for proton radiation. They
have all had the same positive results. All of
them would not have been able to afford it had
Medicare not covered it. |
| Commenter: |
Wolfe, Robert
|
| Title: |
Captain U.S. Navy retired |
| Date: |
9/4/2008 12:03:33 PM |
| Comment: |
Proton Radiation
At age 72, I believe the Lord led [PHI Redacted] to proton
treatment for prostate cancer. I also believe
that proton radiation has cured [PHI Redacted] prostate
cancer as evidenced by three years post treatment
semi-annual PSA readings of
The number of years that life has been
extended remains to be determined. I am very
grateflull that Medicare coverage made this
option possible.
[PHI Redacted] urologist advised that cancer was too far
advancaed for surgery to be an option and
recommended controlling cancer cell activity with
hormone therapy. This stop-gap non-cure option
was not appealing as the best method for dealing
with this dreadful disease. Fortuntely I learned
about proton beam treatment and both Medicare and
Tricare=for-Life agreed that it was an
appropriate investment in [PHI Redacted] health care.
The cost of health care for our nation is rising
at alarming rates. To consider reducing options
for aging souls as a "balancing-the'budget"
measure seems unfair to those whose contributions
have made Medicare possible in the first place.
In [PHI Redacted] case, this cancer may have been the result
of being exposed to agent orange in Viet Nam.
Not that [PHI Redacted] should be treated any diffently than
anyone else, I will be extremely disappointed if
Medicare chooses to eliminate protron therapy as
a treatment option.
Respectfully,
Robert E. Wolfe
Captain U.S. Navy retired. |
| Commenter: |
Klein Ph.D., Paul
|
| Organization: |
Independent Consultant |
| Date: |
9/4/2008 12:49:06 PM |
| Comment: |
I have a Ph.D. in Nuclear Engineering/Physics and feel that I should comment on the therapeutic use of protons for a variety of cancers including prostate. I have no special knowledge of details of cancer itself, or the cellular biology involved. However, I do understand the physics of the energy loss of charged particles and radiation in matter. The desirability of using protons over using x-rays(IMRT), is really quite easy to understand.
First let’s follow what an x-ray beam does: Imagine that we have a lump of cancerous tissue to be targeted and that it lies inside the body. An x-ray beam needs to first traverse body tissue to get to the target, producing unwanted damage to this beam entrance material. Next, the residual beam hits the target, and finally the residual beam damages the remaining tissue before the beam can exit the body. So we have both entrance and exit unwanted damage. X-ray beams have another undesirable characteristic. They tend to produce unlocalized radiation which results whenever an x-ray interacts. This radiation in turn contributes to damaging good tissue that is not in the desired target area.
Next, for comparison, let’s follow a proton through the same situation of target tissue embedded within other healthy tissue. Protons have a unique range depending upon their energy. Another interesting property of protons is that the slower they go, the more damage they produce around their track. As they finally stop, they deliver an extra burst of energy loss, and hence damage, in the immediate location of the stopped proton. So, proton treatment involves tuning the beam energy to be sure that the protons are stopped within the target tissue. As the beam enters the patient, damage along the track is relatively low, until the beam starts to slow. The proton then enters the target and delivers its maximum damage. And finally there is no exit beam resulting in no damage in the region where x- rays continued to produce damage. Finally there is less spreading of secondary radiation around the beam than was present with x-rays.
I think it is safe to say that the physics indicates that there are definite advantages to using a proton beam over IMRT as far as the fraction of energy expended in the target, and producing less unwanted side effects. I apologize for this simple exposition, and I am well aware that there are many other factors to consider, but I hope it will help to clarify the important and preferred role of proton therapy. Physics demonstrates the clear advantage of protons over x-rays. There is little question about that. The only remaining question is whether our society is willing to pay for it. I, for one, hope so.
Paul R. Klein Ph.D. spklein2003@yahoo.com .
|
| Commenter: |
Bloodgood, Charles
|
| Title: |
Concerned Citizen |
| Date: |
9/4/2008 12:59:17 PM |
| Comment: |
With regards to the CMS proposal to stop coverage
for Proton Treatment for Prostate Cancer I
respectfully request that you DO NOT stop this
very important coverage. [PHI Redacted] was treated with this
procedure and when [PHI Redacted] was admitted to the facility
PSA was 9.8 with a gleason score of 9. [PHI Redacted] had
twelve biopsy samples that were all cancer. [PHI Redacted]
just recently had second PSA check up after
treatment and for both check up's the results
show 0.0 This along with hundred's of friends
that have experianced the same results should
prove that it is the best treatments. I have one
friend that had implants and spent 2 months with
a catheter in him and recently told me that his
PSA is climbing again.[PHI Redacted] had his removed
at age 69. He is now 83 and is still wearing
diapers. Immediatly after receiving Proton
treatments each day [PHI Redacted] went and played racket
ball, basketball, and some days participated in
areobics. I have certainly never found anyone who
had any of the options doing that.
Again, PLEASE do not stop this important
coverage. Thank you for taking my comments into
consideration and pray that you will decide in
favor of continuing this very important coverage. |
| Commenter: |
Schimmelman, Arthur
|
| Date: |
9/4/2008 2:03:20 PM |
| Comment: |
|
[PHI Redacted] I wish to
make this confirming notice that [PHI Redacted] treatment was
PROTON THERAPY. Course of treatment was completed
in [PHI Redacted]. [PHI Redacted] monitor PSA and it remains
below .90. An indication of cure. [PHI Redacted] enjoyed
no side affects or debilitating bodily function
as a result of this treatment protocal. Had [PHI Redacted] not
received medical health coverage could not have
afforded this excellent treatment and cure.I know
I speak for 100's of patients when I make the
above statement. Proton is the least invasive
procedure and should be available to all
suffering from this killer disease! |
| Commenter: |
Collins, David
|
| Date: |
9/4/2008 2:49:01 PM |
| Comment: |
Any radiation is harmful to healthy tissue. Proton treatment minimizes the entry radiation dose, maximizes the dose to the tumor and has negligible exit dose. Beacause the radiation dose to healthy tissues is less with protons, the dose to the tumor can be greater leading to higher cure rates and fewer side effects. Proton treatments should be available to all prostate patients.
David Collins, very satisfied patient |
| Commenter: |
Kumpula, Les
|
| Date: |
9/4/2008 3:31:33 PM |
| Comment: |
|
The idea to remove medicare coverage for proton
treatment of prostate cancer would be a major step
backward. As a scientifically trained person, [PHI Redacted]
made the decision to get this treatment six years
ago because it was the only method that could
accurately treat cancer deep in the body without
destruction of the outer tissues. Proton beam
radiation penetrates outer tissue without damage
before destroying the inner targeted area, whereas
conventional photon radiation destroys any tissue
on contact and loses its strength as it travels
deeper. This accurate targeting of deep tissue is
what makes the elimination of side effects possible.
This is the reason that many new proton centers
are being built. Most treatments for prostate
cancer are effective, but only proton therapy
achieves highly effective results without any side
effects. The cure of [PHI Redacted] prostate cancer without
any side effects made cancer a minor issue instead
of a life altering problem. Without Medicare
coverage, this wouldn't have been possible.
The total cost to medicare for [PHI Redacted] treatment was
about $26,000, which seems to be reasonable
compared to other methods.
Please keep in mind that physicians that treat
prostate cancer with the old methods and do not
have access to these high tech facilities have a
lot to lose due to the competition of this
scientific advancement. |
| Commenter: |
Miller, Billy B.
|
| Date: |
9/4/2008 5:37:30 PM |
| Comment: |
9-4-2008
Dear CMS,
I want to comment on Proton Beam Radiation Treatment for Prostate Cancer. [PHI Redacted] was
diagnosed with Prostate Cancer at the Veterans Administration in late [PHI Redacted]. [PHI Redacted]
consultation was with a lady doctor, in charge of the surgery treatment area for the VA.
Their treatment at the VA was limited to either surgery or traditional radiation, and
they required a patient consult with both heads of each department, and come to their
own decision as to which type of treatment to accept. [PHI Redacted] went back to lady doctor
surgeon to tell her [PHI Redacted] was ready to accept the surgery as soon as possible. That very,
very wise lady suggested that [PHI Redacted] attend some of The American Cancer Society, Cancer
Survivor Meetings that were being held at multiple locations here in the metroplex. [PHI Redacted]
attended 3 of the different meetings at different locations. [PHI Redacted] found that the large majority of the "survivors" were mostly pleased to survive, but also observed that most
of the "survivors" suffered a wide variety of side effects and problems.
[PHI Redacted] also observed not only were there many problems, but very good odds that the cancer
could return or was not totally removed or destroyed. After a few meetings [PHI Redacted] discovered
a small group of guys that had been to California to a Proton Beam Radiation medical
center. They without a doubt way exceeded the results of all the varied procedures that
were available. At that time ([PHI Redacted]) there were not any other choices for this
procedure, with their years of success and experience. There was another place using
another form of Proton Beam treatment in combination with a confusing mix of other
stuff, but I could not find success or experience at that facility.
[PHI Redacted] made decision for treatment at the medical center in California. [PHI Redacted] talked to
lady surgeon doctor at the VA, who congratulated [PHI Redacted] for what she thought was a wise
decision. [PHI Redacted] and all of my Cancer Survivor friends all believe Proton Beam Radiation
treatment for Prostate Cancer is far better and in the long run "Less Expensive" than
alternate procedures. If your operation is trying to save budget money by eliminating
Proton treatment, I strongly believe you are on the wrong track. [PHI Redacted]
"BOB" (Brotherhood of The Balloon) represents thousands of Cancer Survivors that have
experienced Proton Beam Radiation Treatment. I have yet to ever find or run into a
Prostate Cancer patient from that facility and method of Proton Beam Radiation that
was not very pleased with their loving and through care and healing.
Yours Truly,
Billy B. Miller
[PHI Redacted] |
| Commenter: |
gray, carroll
|
| Organization: |
individual |
| Date: |
9/4/2008 5:43:11 PM |
| Comment: |
I am puzzled as to why no comparative studies
have been conducted between proton and photon
raidation treatment. [PHI Redacted], I researched all
availalble therapies and believe the best case
for effective treatment of [PHI Redacted] condition is proton
therapy. Killing the cancer with protons is as
effective with fewer side effects for the
individual, which is often overlooked in this
debate. |
| Commenter: |
KENDEL, Michael
|
| Date: |
9/5/2008 12:27:22 AM |
| Comment: |
It is foolish to stop Medicare payments for proton beam
radiation treatments. [PHI Redacted] was treated in [PHI Redacted] at Loma
Linda Hospital with proton beam radiation for prostate cancer.
To this date, there is no clinical evidence of any recurrence of
cancer[PHI Redacted]. This technology was most
definitely the best available at the time of my treatment and it
proved itself to be very effective. I believe, from followup
studies, that proton beam radiation is the most effective and
precise radiation treatment available that also protects, more
effectively, healthy tissues and prevents some of the more
unpleasant side effects of that treatment to cure cancer. Even
the most modern photon radiation (IMRT) is not as accurate and
side effect minimizing as modern proton beam radiation
treatment. [PHI Redacted] I would also encourage any other person that I know to
check out proton beam radiation treatment before choosing any
other treatment. Medicare should continue to support this
wonderful medical technology and the elderly patients that are
stricken by cancer and need that treatment to save their lives. |
| Commenter: |
Mack, Michael
|
| Date: |
9/5/2008 1:04:08 AM |
| Comment: |
[PHI Redacted] received Proton Beam treatment in [PHI Redacted]. [PHI Redacted] PSA was 11.2,Gleason was 4 and Staging was T1C. [PHI Redacted] PSA today is .6. [PHI Redacted] never had any incontinence, sexual dysfuntion or side effects. [PHI Redacted] urologist said that Surgery was the only cure. How wrong these Doctors are. The same happened to many friends of mine who followed [PHI Redacted]. Please do not take away the hope of others who would benefit from this incredible Medical Advancement. You or someone you love might need it some day.
|
| Commenter: |
Weaver, Park
|
| Date: |
9/5/2008 10:48:39 AM |
| Comment: |
PROTON THERAPY: I write to urge continuation of
Medicare reimbursement for Proton Beam Ratiation
Therapy (PBRT). [PHI Redacted] diagnosed with prostate
cancer in [PHI Redacted], and discussed case with
several top urologists in Southern Calif. All of
them wanted to immediately perform surgery. None
even suggested reading about PBRT. After [PHI Redacted] read
voluminous information about the various
treatments possible to treat prostate cancer [PHI Redacted]
chose PBRT at Loma Linda University Medical
Center. [PHI Redacted] chose it because it was non-invasive,
had minimal side effects (particularly when
compared to the other possible treatments), and
was all out-patient. [PHI Redacted] PSA has been under 0.7
since completion of PBRT in [PHI Redacted].
It would appear that all of the medical people
writing to oppose Medicare reimbursement for PBRT
have a monetary interest in opposing; they are
losing money when persons such as [PHI Redacted] chose
PBRT over expensive surgery/hospital/etc.etc.
treatments.[PHI Redacted] |
| Commenter: |
Clark, Robert
|
| Title: |
retired mechanical engineer |
| Date: |
9/5/2008 1:36:45 PM |
| Comment: |
I was fortunate enough to learn of proton therapy
from a friend [PHI Redacted]. [PHI Redacted] underwent ten weeks of
proton therapy four years ago without any side
effects whatsoever, during treatment or since.
[PHI Redacted] most recent PSA was 0.34 in April 2008. All
of [PHI Redacted] plumbing operates as originally intended.
For all practical purposes, it is as though [PHI Redacted]
never had the disease. [PHI Redacted] belong to a local
Prostate Cancer Support Group and strongly
encourage all newly diagnosed members to
investigate proton therapy, and to read the book
You Can Beat Prostate Cancer by R.J. Marckini
before choosing a course of therapy for
themselves. I have freinds who have had
Brachytherapy and surgery and they have resulting
quality of life issues that [PHI Redacted] other proton
graduates who belong to Prostate Cancer
Support Group have never had to deal with. I
believe that if urologists were truly impartial,
and not trained surgeons, they would all
recommend proton therapy because it is non-
invasive, does minimal damage to surrounding
tissue, and typically does not cause any
reduction in quality of life. Medicare and
Medicaide should continue to fund proton therapy
for prostate cancer. |
| Commenter: |
Morgan, D.Min, J. P.
|
| Title: |
Doctor |
| Organization: |
Retired |
| Date: |
9/5/2008 3:46:09 PM |
| Comment: |
|
Proton beam therapy for prostate cancer appears
in your 7/30/2008 document as a potential topic
for discussion in the third quarter of 2008. In
the paragraph devoted to this topic you
state, “no current comparative trials comparing
(it) to usual therapy”. I presume you are
referring to randomized clinical trials (RCTs),
since it is my understanding that even those
requesting RCTs (e.g. Brada et al. Journal of
Clinical Oncology 25:965-970. 2007) do not
contest the various arguments that favor protons
over x-rays. Even if those studies showed no
difference among the treatments, it would be “the
lack of equipoise in the arms of any trial” that
would fail to meet the central requirement for
performing an RCT.
Any discussion on proton beam therapy must
include consideration of the quality of life
issue. During and after treatment those receiving
radiation via a proton beam are usually able to
lead a normal, productive life. [PHI Redacted] had about four uncomfortable nights
during nine weeks of treatment. Other than that,
it was business as usual. In my current book,
Faith and Proton Therapy vs. Prostate Cancer
(ISBN: 978-1-934666-29-6), I document how [PHI Redacted]
actually gained strength while being exposed to
radiation, in stark contrast to what can take
place when x-rays rather than a proton beam
delivers it. |
| Commenter: |
Jackson, Roy
|
| Date: |
9/5/2008 4:12:47 PM |
| Comment: |
I believe it is extreamly important that Medicare
continues to cover Proton therapy for prostate
cancer. Side effects and cure rate are very
important considerations when selecting a medical
procedure.[PHI Redacted]
|
| Commenter: |
Jordan, Jack
|
| Organization: |
Brotherhood of the Balloon |
| Date: |
9/5/2008 4:20:52 PM |
| Comment: |
CMS Consideration in No Longer Providing
Reimbursement for Proton Beam RX for Prostate
Cancer.
[PHI Redacted] received proton beam therapy for
prostate cancer paid for by Medicare and I am a
proponent of Medicare continuing to pay for this
treatment. I was fortunate to know someone in
the southern California area who brought to my
attention the proton beam radiation therapy
being offered by Loma Linda University Medical
Center in [PHI Redacted]. After considerable
research into the modalities of treatment for
this disease I concluded that, [PHI Redacted], it was
the best treatment available. [PHI Redacted] medical
history was one that very strongly discouraged
surgery as a good choice. I personally found
those who had undertaken other modalities and
were suffering many long term side effects.
Additionally, when [PHI Redacted] asked urologist about
this treatment, because of his having been
previously located near Loma Linda, he knew
about the proton beam therapy and recommended
that [PHI Redacted] pursue this type of therapy. [PHI Redacted]
After about a 9 month to one year period
following treatment [PHI Redacted] PSAs fluctuated some (but
overall had a downward course; [PHI Redacted] PSAs now for
over six years have been below 1.0 and most of
those were below 0.1. [PHI Redacted] felt good during
treatment and no side effects from it. I
think that CMS should give careful consideration
to the lack of side effects. Treating
undesirable side effects for years can also
become very expensive. Certainly consideration
should be given to the improved quality of life
that the absence of these side effects allows
the patient. My vote is for CMS to continue to
pay for proton beam readiation for prostate
cancer. I hope tha CMS will have at least one
or two men on the board making the decision who
have had severe and/or chronic side effects of
other types of therapy for this disease. |
| Commenter: |
MacKay, Mark
|
| Date: |
9/5/2008 5:41:41 PM |
| Comment: |
|
I'm not going to pull any punches here but the detractors of
Proton Beam treatment specifically in regard to Prostate Cancer
treatment are usually specialists in other treatments. Hardly an
unbiased segment of the medical ''profession''. [PHI Redacted] ran into the
same bias when weighing the options [PHI Redacted]
discovered that had Prostate Cancer.
Every Dr. [PHI Redacted] spoke with decried all other treatments as
barbaric, and their methods as the only way to treat it. I've seen
better behavior from used car salesmen. The University of Utah
Huntsman Cancer Center professed to have never heard of the
treatment! Talk about not keeping up with the happenings in
your field of supposed expertise. As for the advantages of
Proton treatment, well they are many.
1. no invasive surgery and it's possible problems.
2. side effects limited to a sunburn on your hips and a slight
burning when urinating during treatment.
3. NO IMPOTENCE. if that's not reason enough, well then go
ahead with other treatments.THEY cannot claim this but will
utter vague statements about ''nerve saving techniques'' all of
which are total B.S.
4. 2 years later, with a recent biopsy, [PHI Redacted] NEGATIVE for cancer.
5. [PHI Redacted] continue a career as an airline pilot virtually unhindered by
Proton Beam Radiation Treatment.
If I was 60 years old, fat and comfy in my field of practice as a
prostate cancer surgeon or trained in other methodologies,
wouldn't I decry Proton Beam Treatment as it totally obsoleted
my procedure and devastated my bottom line?
Wouldn't I try and stop Medicare coverage of this procedure that
renders me obsolete? |
| Commenter: |
Odom, John
|
| Date: |
9/5/2008 6:28:08 PM |
| Comment: |
Re: PSA Testing and proton beam treatment for
prostate cancer.
I have read news reports that a discontinuance
of coverage for these items is being considered.
I believe this is a huge mistake. The reasons
cited in the news reports were alleged were
economic and "quality of life" issues.
Several of my friends have had surgery or
cryotherapy for prostate cancer, with or without
hormone therapy, and most do have serious
quality of life issues. [PHI Redacted] chose proton beam
therapy and had NO side effects and 5 years
of constantly low PSA. [PHI Redacted] had NO discomfort at
the time of treatment. I have also had several
aquaintances who did not have screening, and
because of delayed diagnosis have since died,
or are dying a painful death from metastatized
prostate cancer.
The evidence is overwhelming that in the
majority of cases, proton beam therapy is
superior to every other therapy for this
condition. It is safe, medicaly effective and
cost effective. It should be retained on the
covered options list as should PSA screening. |
| Commenter: |
Haas, Louis
|
| Title: |
President |
| Organization: |
Fine Refrigeration |
| Date: |
9/5/2008 8:01:14 PM |
| Comment: |
Re: PROTON RADIATION THERAPY FOR PROSTATE CANCER
My comments for the continuing reimbursement by
Medicare for proton radiation treatment for
prostate cancer are heartfelt and are based on
my own personal experience.
[PHI Redacted] was diagnosed with prostate cancer 2.5 years
ago. As an engineer by trade, I made a
concerted and extensive study of all the
treatments available for this type of cancer. [PHI Redacted]
concluded after research, going through the
treatment and post treatment testing and side
effects that Proton Radiation is the finest
treatment currently available throughout the
various facilities in the United States. After
talking with various physicians during my
researach, I concluded that Proton Radiation was
not only state-of-the-art treatment, but chances
of having any lingering after effects in
comparison to other treatments was much, much
better.
It would be a tragedy for people currently
covered by Medicare and needing treatment to be
denied this option. It is unfortunate that many
physicians are not even aware of the treatment,
or choose not to mention it in favor of their
own methodology. The existing facilities, and
those currently in the planning stages, require
considerable investment; but the treatment gives
a larger number patients a quality of life
during and post treatment that many other types
of treatment do not seem to offer.
Medicare offers "older" people the best health
insurance coverage in the world. Please do not
diminish this expectation; continue to offer
coverage for Proton Radiation as an option for
treating forty (40) different forms of cancer!
[PHI Redacted] would not have been able to avail
[PHI Redacted] of this treatment if I had to pay for it
on. Thanks for covering this fine
program!
Louis M. Haas
September 4, 2008 |
| Commenter: |
Keyser, Keith
|
| Date: |
9/5/2008 10:19:36 PM |
| Comment: |
I am commenting on the potential removal from
Medicare Coverage of proton radiation for
prostate cancer.
[PHI Redacted] was diagnosed with prostate cancer in [PHI Redacted]. [PHI Redacted] [PHI Redacted] had died at 95, [PHI Redacted] died two years later
at 93. [PHI Redacted]
[PHI Redacted] began attending a
prostate cancer support group to learn as much
from their experiences. I had
discussions with Urologists, Radiation
Oncologists and Surgeons. Since most of the men
in the prostate support group had surgery for
their treatment and claimed to be happy with the
results, [PHI Redacted] scheduled surgery. At the next
meeting, prior to surgery, [PHI Redacted] heard from a man
that was totally incontinent after his surgery.
Even though the men in the support group claimed
to have an acceptable sexual life after surgery
(I’ve since learned that is very subjective), [PHI Redacted]
had accepted that [PHI Redacted] might have a reduced sexual
capability, but [PHI Redacted] was not willing to accept a
life of incontinence. I later learned of two
other men in the immediate “network” of patients
that were totally incontinent after their surgery.
[PHI Redacted] canceled surgery and began research for
other alternatives. [PHI Redacted] selected proton radiation
because it was the only treatment for which could find a reasonable database of men who had
the treatment and were willing to document and
talk about their results. A year after
treatment ended [PHI Redacted] cancer free, am totally
continent[PHI Redacted].
(As a side note, the radition oncologist and the
surgeon [PHI Redacted] had talked to were visible angry with
[PHI Redacted] for choosing proton treatment.)
I can’t find any reliable information about the
side effects from normal radiation treatment or
surgery for prostate cancer. A recent NY Times
article “August 27, 2008, 9:26 am Regrets After
Prostate Surgery” indicated that nearly 20% of
men who had surgery were later sorry they had the
surgery.
What seems to be needed, rather than knocking
proton radiation as a treatment, is a clear
definition and measurement of the side effects
for all prostate cancer treatments. I believe it
is becoming more commonly accepted that there
isn’t a question about whether there is
incontinence after surgery, it is a matter of the
degree of incontinence. The same is probably
true about sexual performance.
As we all live longer and expect to have a good
quality of life later in our lives, the quality
of life issue should be considered very seriously
before any cutting back on proton support is
made.
There is a database of at least 3500 men that
have had proton radiation treatment for prostate
cancer. I don’t know that all of them are 100%
satisfied with the treatment, but at least it
gave me reliable first hand information about
side effects that I could not find for any of the
other prostate cancer treatments.
Please don't remove Medicare support for proton
treatment of prostate cancer until there is
reliable data that other treatments do not cause
any more side effects than proton radiation. |
| Commenter: |
Mille, Rick
|
| Date: |
9/6/2008 9:36:32 AM |
| Comment: |
[PHI Redacted] I too was
troubled by lack of comparative trials between
modalities. It seems that the best head-to-head
study would involve a randomized test of
treatments involuntarily assigning patients the
modality of treatment. Clearly few would agree to
that, if it were ethical. So we use multivariate
analysis, holding some variables constant. To me
the first problem is that the population of those
undergoing surgery has to be fitter, and probably
younger, and more likely to have organ contained
disease than those undergoing radiation—just to
withstand the rigors of and to justify the
surgery. Controlling for age would be easy, but
controlling for amount of disease is another
problem. For example, [PHI Redacted] gleason score of six,
ten years ago, would probably have been a five,
according to a study by the University of Chicago.
This grade inflation, the Will Rogers affect,
makes it tough to control for a category that has
changed in the last decade. Another problem is
the changing protocols. For example, the proton
radiation dose ten years ago was less than it is
today. Surgery now has a robotic option. Data
are not available for these newer methods. Lack
of data, lack of comparative trials does not
justify lack of funding.
Prostate cancer patients are the majority at
proton beam centers. [PHI Redacted] are treated more
efficiently than other cancer patients and keep
the gantries full, lowering the cost per treatment
to all. Reducing funding of prostate cancer
patients may have the adverse effect of reducing
the treatment and research on other forms of
cancer—head, neck, spine, and , possibly soon,
breast cancer. Can you imagine adversely
effecting breast cancer treatments? Encourage
comparative trials, but please don’t cut the funding.
|
| Commenter: |
Bullock, Dan
|
| Title: |
Retired |
| Organization: |
Law Enforcement Executive/Consultant |
| Date: |
9/6/2008 11:42:31 AM |
| Comment: |
[PHI Redacted] a successful patient of Proton Radiation
Treatment, and an aggressive and vocal
proponent of that treatment option for the past
five years. I was shocked to learn that
Medicare coverage for this excellent treatment
option may be discontinued.
Since [PHI Redacted] was only 58 years old when went
through the 8 week proton treatment regimen, [PHI Redacted]
did not qualify for Medicare coverage, but,
instead, relied upon private medical coverage
to cover the majority of the treatment costs.
Since many of my friends with Prostate Cancer
are covered by Medicare, I am always quick to
point out to them that Medicare does cover
Proton Radiation Treatment. That fact seems to
help them to focus their study on treatment
options, based on all the factors, not just
cost/medical coverage.
[PHI Redacted], like many of fellow Proton Radiation
Treatment patients, experienced no negative side
effects during and post treatment.
I believe there are 5 and 10 year studies that
show that Proton Radiation Treatment is at least
as effective as standard radiation treatment and
surgery (The Gold Standard). I, for one, am
very glad that [PHI Redacted] elected Proton Radiation
Treatment over the surgery previously
scheduled.
For the thousands of men who are dianosed with
Prostate Cancer each year, please do not
discontinue Medicare funding for Proton
Radiation Treatment.
Sincerely,
Dan Bullock |
| Commenter: |
Turns, Craig
|
| Date: |
9/6/2008 5:47:24 PM |
| Comment: |
[PHI Redacted] was treated for prostate cancer using protons. [PHI Redacted] not suffered from any of the common side
affects of other treatments. I consider this a
superior form of treatment. Clearly the increase
in centers across the nation are proof this is a
superior form of cancer cure. |
| Commenter: |
Bell, Skip
|
| Date: |
9/6/2008 5:54:08 PM |
| Comment: |
[PHI Redacted] received proton beam therapy for prostate
cancer and wish to comment that the treatment was
effective, with very little side effect, and has
reduced any need for folllow-up. Please continue
to make it available to medi-care patients.
Skip Bell |
| Commenter: |
Ralph, Joseph R.
|
| Title: |
Retired building contractor |
| Date: |
9/6/2008 6:08:13 PM |
| Comment: |
Please do not cut medicare coverage for PROTON
BEAM THERAPY to treat cancer it is the best, [PHI Redacted]
received PBT [PHI Redacted] and doing fine PSA 0.01
Last four checkups. |
| Commenter: |
Wickes, Bob
|
| Title: |
Business Owner |
| Organization: |
SDA |
| Date: |
9/6/2008 6:47:31 PM |
| Comment: |
Proton Beam Treatments for Prostate Cancer Patients
After being diagnosed with Prostate cancer in
[PHI Redacted], [PHI Redacted] did a great deal of research to determine
what treatment would best keep [PHI Redacted] alive. The
research included; talking to Medical Doctors,
researchers, patients of all current treatment
methods (some of which were being re-treated as
their choice did not remove all of the cancer),
reading from various professional writings and
visiting, with orientations wherever possible, the
different treatment centers. The research also
included patient results from the different
treatments.
This research led [PHI Redacted] to one conclusion, if wanted the best results, with the fewest side
effects, then the Proton Beam treatments was the
only way to go.
In the long run, I am sure that [PHI Redacted] saved the
insurance company a great deal of money since
there have been no side effects that may have led
to additional expenses.
Thank God discovered the Proton Beam.
Bob Wickes |
| Commenter: |
Steele, Lee
|
| Date: |
9/6/2008 9:32:53 PM |
| Comment: |
I wish to comment on the proposals to not cover
Medicaid coverage for Proton Beam Radiation for
Prostate Cancer. [PHI Redacted] received Proton Beam
Radiation for prostate cancer under
Medicaid/supplement insurance coverage in
February,March and April [PHI Redacted]. The treatment was
very successful in eliminating the cancer with
virtually no side effects. During treatments
[PHI Redacted] was able to work 30 hours per week in a custom
cabinet shop, which would have been impossible
had [PHI Redacted] chosen surgery, regular radiation or other
current accepted treatments. [PHI Redacted] quality of life
remained virtually normal and has continued since
treatment. Why should medicaid coverage be
denied for Proton Beam Radiation treatment for
prostate cancer, when there are numerous sites
under construction or which have opened just
because those sites may not be in the local
proximity to where the individual lives? We who
have become eligible for medicaid coverage should
not be deprived of treatment benefits when we
have worked for so many years to be eligible for
its benefits just because other treatment
modalities claim to be able to treat prostate
cancer but cannot back up their claims of
effectiveness, cost and above all maintain the
quality of life cancer victims should expect. To
eliminate medicaid coverage for Proton Beam
Radiation for prostate cancer victims will be a
tremendous step backward. |
| Commenter: |
Smith, Lee
|
| Date: |
9/7/2008 8:29:19 AM |
| Comment: |
Only individuals who have not personally
experienced prostate cancer could reasonably
suggest that the cost comparison in this debate
should begin and end with the fact that survival
rates are equivalent.
Follow-on costs and quality of life are
legitimate cost factors in the equation.
Individuals and government alike pay enormous
sums for improved quality of life in countless
ways. Why would these sums be left out of
equivalency calculations in this one issue? Not
to be maudlin about it, but the absence of the
classic side effects of surgery and photon
radiation is priceless.
[PHI Redacted] a 72 year old chemical engineer two years
post proton radiation treatment for prostate
cancer. [PHI Redacted] had no side effects. PSA is
holding below 1.0.
[PHI Redacted] chose proton radiation because of extensive
data, widely available, showing minimal side
effects from proton radiation compared to
surgery, photon radiation in all its forms, and
hormone deprivation therapy.
In fact, [PHI Redacted] employed hormone deprivation therapy
for almost six years as a least-worst alternative
to surgery and photon radiation. [PHI Redacted] Fortunately, about the time that
the therapy was becoming less effective, [PHI Redacted]
stumbled upon proton therapy on the internet. [PHI Redacted]
immediately arranged for that treatment.
If Medicare really wants to save money long term,
it should be subsidizing construction of proton
treatment centers. |
| Commenter: |
Smith, Wayne
|
| Title: |
Maj USArmy (ret), Principle Engineer Xerox Corp |
| Date: |
9/7/2008 11:41:45 AM |
| Comment: |
The post Proton prostrate cancer treatment
support group that [PHI Redacted] joined enlightened to the
extreme side effects of radical, DiVinchi
surgery, and x-ray beam treatments which [PHI Redacted] had
previously considered. None of the members had
heard of Proton therapy. [PHI Redacted] was embarassed to
describe treatment with its lack of side
effects. Surely this treatment should remain a
funded tool for medicare. A impartial statistical
study will reveal the total value of Proton
Therapy as compaired to old methods.
[PHI Redacted] regained aviation medical and live a
full and active life in every way, should this
chance be denied my fellow citizens?
[PHI Redacted] Proton Beam was from Feb - 2 May [PHI Redacted]. [PHI Redacted] psa
is still decreasing from 9.0 pretreatment
currently 1.4. A slight ache in [PHI Redacted] hips which
lasted 6-7 months was the only side effect. [PHI Redacted]
treatment was about $63,000 plus out of pocket
travel and rooming expenses of about $10,000.00
over the 3 months in California. Preferred
care and Tricare covered 100% the $63k even
though it was out of the coverage area. They
recognize the value of absence of post treatment
expense for side effects. |
| Commenter: |
Tantlinger, Keith
|
| Date: |
9/7/2008 4:41:46 PM |
| Comment: |
Dear Sirs,
When an [PHI Redacted] associate told me of his
complete cure for his prostate cancer by Proton
radiation, as a professional mechanical engineer
and holder of seventy-nine United States patents,
I am of course interested in anything technical.
Although my innovations are in the transportation
field rather than the medical field, I was
fascinated by my friend’s immediate and complete
recovery, with absolutely no side effects. Years
later [PHI Redacted] was told had prostate cancer, level
Gleason 9. [PHI Redacted] urologist, who had seen [PHI Redacted]
regularly every six months for the previous 20
years (but didn’t detect prostate cancer until
it had progressed to Gleason 9) suggested radical
surgery.
While waiting admission for Proton radiation, [PHI Redacted]
checked with the group in Seattle who are
supposed to be the leaders in the implantation of
radioactive “seeds” in the prostate gland.
Because [PHI Redacted] cancer had progressed to Gleason 9,
the Seattle group advised that was beyond the
stage of prostate cancer that was treatable by
their seed technique.
As you can imagine, I recommend Proton treatment
to anyone I meet who has prostate cancer.
Many come up with stories they learn from
practitioners of other corrective measures. Most
recently a lifelong friend told me he wouldn’t
consider Proton radiation because he “wouldn’t
want a catheter inserted for months in his
urinary canal”, and that he feared
the “incontinence rendered by Proton radiation”.
[PHI Redacted] completed Proton treatment about five years
ago. I never even heard the word catheter. [PHI Redacted]
drove pickup truck 70 miles for each Proton
treatment and drove it 70 miles home,[PHI Redacted]
of course, then drove farm tractor each day
after returning from treatment. ([PHI Redacted] had retired
from the engineering profession.) [PHI Redacted] never
once suffered from incontinence. [PHI Redacted] PSA is 0.02
and current urologist ([PHI Redacted] changed urologists,
of course) now refuses to give further PSA
tests because of age and low PSA readings.
[PHI Redacted] only discomfort between the time [PHI Redacted] learned of
prostate cancer and today,[PHI Redacted], are the hot
flashes due to the Lupron hormone shots that [PHI Redacted]
previous urologist gave without telling me
about the side effects. Curiously, the hot
flashes were accidentally cured by another
medication prescribed by family doctor for a
completely unrelated purpose.
[PHI Redacted]based on my
personal contact with many other Proton radiation
devotees, our preference is due to the precision
by which Proton radiation can be controlled, not
only by area, but by depth. In [PHI Redacted] case never
experienced even the slightest pain and totally free of any side effects (except the hot
flashes [PHI Redacted] experienced before Proton treatment).
I could never recommend any other type of
treatment for prostate cancer.
Keith W. Tantlinger
Licensed Profession Mechanical Engineer
Life Member, and Fellow Grade Member, Society of
Automotive Engineers
Life Member, American Society for Materials
Life Member, National Rifle Association
|
| Commenter: |
Smith, David
|
| Date: |
9/7/2008 5:16:02 PM |
| Comment: |
Re: Proton Therapy for prostate cancer [PHI Redacted]
received proton therapy from [PHI Redacted]. The treatment was painless, quick, and
effective. There were NEVER any side effects. [PHI Redacted]
was able to continue a comfortable life-style. [PHI Redacted]
last PSA was 0.08 and the DRE revealed healing
with no rough scar tissue. [PHI Redacted] couldn't have
afforded this treatment without the help of
Medicare and supplemental insurance. [PHI Redacted]
feeling wonderful knowing that this cancer has
been eliminated with no lingering health
problems. Life is great again!! What a terrific
feeling it is to know that you longer need to
worry about this cancer. [PHI Redacted] Proton
therapy is a great treatment for many reasons,
and should not be denied to those who cannot
afford to pay for it themselves. |
| Commenter: |
Leyman, James G.
|
| Title: |
Private Citizen |
| Date: |
9/7/2008 5:37:49 PM |
| Comment: |
Please not remove CMS approval for Proton Beam
therapy under Medicare. [PHI Redacted] was sucessfully
treated with Proton Beam Therapy at
UFPTI the fall of [PHI Redacted]. [PHI Redacted] had a very aggressive
form of Prostate Cancer with a PSA of 10.7 and a
Gleason score of 9..[PHI Redacted] had virtually no side
effects of any kind. You only need to see who,s
ox is being gored to determine the opposition to
this funding. Not many urologists know or want
their patients to find about PROTON. mEDICINE IS
A BUSINESS. |
| Commenter: |
Sullivan, Ed
|
| Date: |
9/8/2008 9:11:02 AM |
| Comment: |
Three years ago [PHI Redacted] was diagnosed with prostate
cancer. [PHI Redacted] reviewed the various choices available
and selected proton beam therapy. [PHI Redacted] [PHI Redacted] no side effects and the cancer
is gone. I have heard from otherswho have had the
proton therapy and tey have no side effects. Many
people I know in my area have had other
treatments (seeds, x-ray radiation, etc.) and
they have side effects sexual and urinary. Many
are wearing diapers for the rest of theit lives.
Some have had treatments that cost additional
money. |
| Commenter: |
Watts, Nelson
|
| Title: |
Director |
| Organization: |
University of Cincinnati Bone Health and Osteoporosis Center |
| Date: |
9/8/2008 9:35:02 AM |
| Comment: |
Regarding bisphosphonate treatment for osteoporosis and osteonecrosis of the jaw, there is no reason to believe that the route of administration is a risk factor. Dose (i.e., higher doses given IV for cancer) increase the likelihood of ONJ, but the osteoporosis IV dose is approximately 1/10 of the dose given for cancer. This is addressed in the ASBMR task force report. Khosla S, et al. Bisphosphonate-associated osteonecrosis of the jaw: report of a task force of the American Society for Bone and Mineral Research. J Bone Miner Res 2007;22:1479-1491. |
| Commenter: |
Wepsic, H. Terry
|
| Title: |
Former Cheif of Staff and Professor Emeritus |
| Organization: |
Veteran Administration Hospital and Univ Calif. Irvine |
| Date: |
9/8/2008 3:05:40 PM |
| Comment: |
I am a [PHI Redacted] retired academic Pathologist
who taught at the University of California San
Diego, Loyola University Medical School, and the
University of California at Irvine. I had a long
time affiliation with the Department of Veterans
Affairs and held the position of Chief of Staff
at Long Beach VA Hospital from 1990-2001. I have
been retired for about five years. When [PHI Redacted] was
diagnosed with early stage prostate cancer in
December of [PHI Redacted], very carefully look at all of
the various treastment possibilities for early
stage prostate cancer. [PHI Redacted] chose Proton Therapy at
Loma Linda University for several clear reasons.
The first reasons is that the way protons deliver
their energy is through the phenomenon of the
Bragg Peak that causes 90% of the energy to be
released when the protons stop. This means that
there is minimal side effect scatter to adjacent
soft tissue and adjacent structures. IMRT
delivers approximately 60-70% of the energy from
gamma particles to the prostatic bed. The second
reason [PHI Redacted] chose proton therapy was that there was
very precise targeting to the prostate, to 1.2 cm
beyond the prostate capsule and to the adjacent
seminal vesicles. The tumors arise in the
periphery of the gland and recurrence is in the
adjacent soft tissue and in the adjacent seminal
vesicles. The third reason why [PHI Redacted] chose proton
therapy is that they had a very low sideeffect
profile including no incontinence, minimal effect
on potency and minimal rectal bleeding from
neovascularization. The fourth reason why [PHI Redacted]
chose proton therapy was that they had excellent
outcomes which were clearly as good as any other
treatments. [PHI Redacted] rejected brachytherapy because could now be assured of the dosage of irradiation
that was delivered to the periphery of the
prostate gland and very little to no irradiation
was delivered to the seminal vesicles. Because I
had done academic tumor biology research for over
30 plus years, I was highly qualified to review
all of the appropriate medical literature. [PHI Redacted] made
the right conclusion and [PHI Redacted] been free of
prostate cancer for over five years with no
sideeffects
The current controversary around proton therapy
vs brachytherapy appears to be focused on the
associated costs of each therapy. The physics
involved and the precise targeting associated
with proton therapy certainly caused me to select
proton therapy. I strongly feel that this should
continue to be a clinical option that is
reimbursed through Medicare as it is a very
effective treatment with minimal to no
sideeffects. |
| Commenter: |
Rosenblatt, Murray
|
| Date: |
9/8/2008 4:31:13 PM |
| Comment: |
[PHI Redacted] a cancer survivor thanks to Proton radiation.
[PHI Redacted] completed radiation in [PHI Redacted] with absolutely
no side effects what so ever..[PHI Redacted] enjoying a great lifestyle..I have
encouraged other males to at least look into
proton radiation before selecting other methods
of treatment..Please all forms of treament are
great but let us not get into a war of words and
do what is best for the patient.. |
| Commenter: |
Boley, John
|
| Date: |
9/8/2008 5:08:53 PM |
| Comment: |
|
[PHI Redacted] was treated with proton radiation three years
ago and very distressed that Medicare is
considering removing coverage of this vital
cancer treatment. When [PHI Redacted] was diagnosed and began
research on treatment options it became obvious
that there were grim choices for long term
quality of life among the traditional surgical
and photon radiation treatments. I did extensive
research which including many discussions with
men who had been treated with the traditional
methods. Almost without exception they would,
after initially saying it went OK, begin to tell
me about the various problems with incontinence
and impotence that they lived with. It was very
depressing and caused a great deal of anxiety[PHI Redacted].
[PHI Redacted] I talked with and
corresponded with many who had experienced this
treatment and they reported minimal if any long
term deterioration of their quality of life. My
conclusion is that true all of the treatments
have similarity in outcomes as far as treating
the disease; but the potential long term side
effects are a very real concern. Many
practitioners of the ‘standard’ treatments focus
on the cure and pass over or minimize side
effects. [PHI Redacted] urologist was very hostile to proton
treatment with insinuations that it was some kind
of voodoo. My sense, and it may only be
perception, is that many radiologists and
urologists feel that proton treatment threatens
their practice in some way.
It seems to be very dismissive to focus on the
cure and ignore the long term side effects as if
we were lucky to be cured and just live with
them. Before you come to any conclusion I urge
you to survey the opinions of the men who have
had the various treatments to really understand
the extent of deterioration of quality of life in
each. |
| Commenter: |
GALL, ERNEST
|
| Title: |
Retired US Navy |
| Date: |
9/8/2008 6:18:57 PM |
| Comment: |
[PHI Redacted]received 8 weeks of Proton & 3D
therapy for Prostate Cancer - No complications!
[PHI Redacted] had a prostatectomy - spent 10 days in
the hospital, he suffered from incontinence &
erectile dysfunction.
His medical costs as a in-patient for 10 days
exceeded charges for 8 weeks treatment as a
out-patient.
[PHI Redacted] -ERNIE GALL-
|
| Commenter: |
Pulliam, Morris
|
| Organization: |
Morris W. Pulliam, M.D., LLC |
| Date: |
9/8/2008 11:11:07 PM |
| Comment: |
I am a neurosurgeon certified by the American Board of Neurological Surgery in May 1979. I was Chairman of Neurosurgery and residency program director for 10 years at the National Naval Medical Center, Bethesda, MD. I have been in private practice in Warren and Youngstown Ohio for the past 9 years.
In the past 6-7 years I have preformed well over 500 kyphoplastys. Before that I had performed several vertebroplastys. I have treated vertebral compression fractures in patients with osteoporosis and metastatic disease. Before adopting vertebroplasty and kyphoplasty, I had treated such patients with very unsatisfactory medical modalities with analgesics and bracing. Bracing in particular was a waste of time and money in that very few of the people that I ordered braces for ever wore them for more than a few days and most patients continued suffer unremitting pain for months with frequent exacerbations as fractured vertebrae continued to collapse further and further.
I feel strongly that patients with vertebral compression fractures in osteoporsis or metastases should be treated with kyphoplasty ACUTELY. This allows rapid return to premorbid levels of functional activity but, importantly, prevents not infrequent additional vertebral collapse with increased pain and reaching a degree of severe collapse wherein kyphoplasty (or vertebroplasty) are rendered impossible.
In my experience with 500 plus kyphoplastys I have achieved 90 percent or more pain relief in 85 to 90 percent of patients. I have had no deaths, infections, neurological or cardiopulmonary complications. Leakage rates have been less than 3 percent. 97 percent of patients have been discharged to premorbid living arrangements in less than 24 hours of performance of the kyphoplasty. Over 85 percent are discharged on nothing stronger than acetomenophen or ibuprofen for pain.
This experience clearly demonstrates the health benefits of kyphoplasty for pain relief and restoration of a high level of functional activity. This applies to both tumor and osteoporosis patients.
I am convinced that the partial restoration of vertebral height achieve by kyphoplasty (more than seen in vertebroplasty) reduces spinal imbalance and muscular strain which is part of the reason for the excellent level of pain relief achieved with kyphoplasty. Anyone having observed patients undergoing medical management (anlagesics and bracing) and kyphoplasty would consider use of medical management as cruel and unusual punishment.
CMS should seek less patient abusing means of cost control than the dollars that might be saved by placing unwarranted restrictions, financial or otherwise, on performance of kyphoplasty.
Thank you for your consideration of the above.
|
| Commenter: |
Vaughn, Catherine
|
| Date: |
9/9/2008 1:37:27 AM |
| Comment: |
Proton Beam Radiation Treatment for Prostate
Cancer.
[PHI Redacted] finished treatment, [PHI Redacted], at
Loma Linda, Ca. for Prostate Cancer. There has
been zero side effects and he feels wonderful,
At his 4 month checkup, his PSA dropped from 12.4
to 2.o.
It is expensive, but in the long run, it is
cheaper because there are no side effects
afterwards. therefore,there is no other costs
involved except his regular check up and PSA
tests. |
| Commenter: |
Clark, Charles
|
| Date: |
9/9/2008 12:24:00 PM |
| Comment: |
It is disheartening to read postings from 'medical professionals' that only consider the technical and first appearance cost aspects of cancer treatment and not the final outcome. At first glance it appears these 'professionals' are concerned from a competitive outlook about a completely proven treatment that might cut into their profit centers. I didn't read in a single posting about the care or side effects of the 'customers' they serve. I have several friends that have each gone through the therapies listed in the postings and each of them have had severe and awful long term problems - I know of no such problems with any of the proton treatment customers I have met and talked with! It is also interesting to note that many of the patients I met at Loma Linda going through treatment had gone through some of these other treatments and now had to come to the Proton Center to clean up what these 'medical professionals' had missed or screwed up - so now what is the real cost to Medicare to pay twice for these treatments when the first treatment would have cured the problem? My opinion is that the proton treatment should be the only option Medicare should consider for the treatment of prostate cancer! |
| Commenter: |
Horton, Billie
|
| Date: |
9/9/2008 12:58:57 PM |
| Comment: |
|
[PHI Redacted] had the proton treatment,it is the best
procedure and worth all the money and time doing
it. No problems after seven years. [PHI Redacted] had this
done at 80 after Dr. said we do not operate
on men of your age. |
| Commenter: |
Church, Thomas
|
| Title: |
Director of Interventional Radiology |
| Organization: |
St. Rita''s Medical Center |
| Date: |
9/9/2008 5:58:40 PM |
| Comment: |
Both Kyphoplasty and Vertebroplasty have worked extremely well in my practice. I have experience with over 500 cases, and the results are nearly miraculous. People who come into my suite barely able to ambulate, leave one hour later pain-free. These procedures work well for Any kind of painful fracture whethr osteoporotic, traumatic , or neoplastic in nature. I Strongly urge you to remove Kyphoplasty and Vertebroplasty from any NCD policy. |
| Commenter: |
Simroth, Don
|
| Title: |
Retired |
| Date: |
9/9/2008 7:13:38 PM |
| Comment: |
[PHI Redacted] received Proton Radiation treatment for prostate
cancer which was covered by Medicare because of age (71).Being a retired chemical engineer, I
carefully studied the cure rates and side effects
of the various treatment options.[PHI Redacted] selected Proton
radiation because the cure rares were the same as
for surgery and conventional radiation but the
side effects were much less.[PHI Redacted] Proton treatment
has proven choise to be the correct one as [PHI Redacted]
have no sign of cancer reoccuring after 4 years
and absolutely no side effects from Proton
radiation treatment.
I believe that Medicare should continue to cover
this procedure in the future.When I first started
to explore proton thearpy, only two sites were
available.Now there are several around the country
and more seem to be on the horizon. I believe this
is happening because of the minimual side effects
from proton radiation.
When considering costs, the additional costs
associated with side effects should be included in
the other treatment oprions.
|
| Commenter: |
Farmer, Merle
|
| Date: |
9/9/2008 10:22:41 PM |
| Comment: |
Proton treatment for prostate cancer
[PHI Redacted] I cannot
express strongly enough my belief that it should
continue to be covered.
[PHI Redacted] had zero side-effects from the treatment
(unlike many of my associates who have suffered
from incontinence and impotence after both
surgery and seed implant treatments). Quality of
life is something that is impossible to measure.
Since treatment [PHI Redacted] PSA has remained at 0.1 and
follow-up exams show no evidence of any
problems.
In fact, my Family Doctor has stated that he will
absolutely have the same treatment should he
develop prostate cancer.
As a side note - [PHI Redacted] decision to have Proton
Treatment was not made due to financial
considerations but due to word-of-mouth research
[PHI Redacted] did with others who had had all types of
treatment and Protons were the overwhelming
winner for both lack of side effects and long-
term prognosis. |
| Commenter: |
marquis, richard
|
| Date: |
9/10/2008 12:11:39 AM |
| Comment: |
[PHI Redacted] a survivor of prostate cancer, and I
attribute the cure to the proton beam treatment
[PHI Redacted]. [PHI Redacted] PSA level is now 0.1.
Medicare approved the procedure and without
Medicare's help, [PHI Redacted] would not have been able to
receive this treatment which I believe was much
better than radical surgery. [PHI Redacted] urologist
strongly recommended radical surgery but 2 yrs
after received the proton beam treatment, he
told [PHI Redacted] that made the right decision. [PHI Redacted] I strongly
recommend that Medicare continue to help pay for
the proton beam treatment. |
| Commenter: |
Wederich, Robert P
|
| Date: |
9/10/2008 6:19:48 AM |
| Comment: |
[PHI Redacted] former prostate cancer patient who was
treated with proton therapy under Medicare
approximately six years ago. [PHI Redacted] suffered no side
effects from the therapy, and PSA has hovered
near zero since the therapy was completed. Some
of my acquintances had far less successful
results from other therapies. I urge you not to
discontinue Medicare payment for proton therapy. |
| Commenter: |
Edison, MD, MPH, Jay
|
| Title: |
MD, MPH |
| Date: |
9/10/2008 10:14:21 AM |
| Comment: |
| I wish to comment on the threat of withdrawal of
Medicare funding of proton beam therapy for
prostate cancer. I am a retired family physician,
who had a second career in international public
health with an NGO. [PHI Redacted] proton beam therapy was a
positive experience with no side effects other
than mild fatigue and dysuria, which resolved soon
after completion of treatment. [PHI Redacted] From [PHI Redacted] experience,
and discussions with other proton patients, I am
totally convinced of the value of proton therapy
in avoiding the high level of morbidity associated
with other modalities. I admit that I began to
have some doubts when reading the comments of
distinguished researchers who oppose proton
therapy. Then I learned of the recent comparative
analysis of proton and photon patients relative to
risk of 2nd malignancy (C.S. Chung, N. Keating, T.
Yock, N. Tarbell,
Comparative Analysis of Second Malignancy Risk
in Patients Treated with Proton Therapy versus
Conventional Photon Therapy, International
Journal of Radiation Oncology*Biology*Physics
Volume 72, Issue 1, Supplement 1, Proceedings of
the American Society for Therapeutic Radiology
and Oncology 50th Annual Meeting, American
Society for Therapeutic Radiology and Oncology
50th Annual Meeting, 1 September 2008, Page S8).
Now, I am more convinced than ever of the
superiority of proton over photon therapy. Maybe
proton recipients will not live longer than
photon patients, but more of us will live better! |
| Commenter: |
Wulf, Marcus
|
| Title: |
Individual |
| Organization: |
None |
| Date: |
9/10/2008 10:15:05 AM |
| Comment: |
[PHI Redacted] a recovering prostate cancer patient who
received proton treatment. [PHI Redacted] experience-and
that of the hundreds of other proton patients
with whom I have had contact-was outstanding.
The tumor was controlled, and the side-effects
were minimal-or none.
In contrast, of the many people who I know that
have had other treatments, the vast majority have
had problems-even including death(either from
recurrence or surgery-related). Many have had to
endure additional treatment, and many have had to
live out their lives with some kind of impairment
of their normal functions.
It is inconceivable that you would restrict
access to proton treatment for prostate cancer
because cheaper treatments are available-they
are also less successful.
|
| Commenter: |
Caliguri, John
|
| Date: |
9/10/2008 11:39:42 AM |
| Comment: |
|
My comment is with respect to the following
proposal;
Proton beam therapy for prostate cancer: Proposed
as means to concentrate radiation therapy and
reduce side effects. Very high upfront cost to
build these facilities and thus only at very few
facilities. For prostate cancer treatment, no
current comparative trials comparing to usual
therapy.
[PHI Redacted] had succesful treatment for prostate
cancer by proton beam radiation. [PHI Redacted] was treated
six years ago, PSA prior to treatment was 23.
Since treatment, PSA is steady at 0.7. [PHI Redacted]
little or no side effects from the treatment.
In the meantime, two friends had conventional
radical prostitectomy, both endured incontinence
and impotence after the surgery. One of them
died later still wearing his depends. Another
aquaintance was treated with cyrotherapy and
still sufferes from the effect of the treatment
on the surounding tissues. I convinced yet
another person to seak treatment by Proton beam
radiation. He [PHI Redacted], as I am, very satisfied with his
treatment and recovery.
The upfront costs are higher because of the
costs of building the facility. However, the
benefits must be well documneted because, since
[PHI Redacted] treatment, three more facitities have opened
and more are currently under construction.
Construction costs will continue to fall as more
are built.
There was sufficient documented evidence, when
[PHI Redacted] was trying to decide on treatment, of the
benefits of the treatment by proton beam
radiation, less side effects and reduced damage
to surrounding tissue. [PHI Redacted] had to arrange follow
up coverage with a local oncologist after treatment. Before treatment he said he
thought traditional radiation therapy would do as
good a job. Subsequent to treatment he
said "You really made the right choice".
I think the statement in the proposal saying
that there are no current studies that show
benefits of proton beam radiation for the
treatment prostate cancer is misleading. The
evidence was clearly there when [PHI Redacted] made decision. I think it should be the
responsibility of "conventional" therapies to
prove that they are as good as Proton Beam
Radiation.
|
| Commenter: |
Armstrong, Eugene
|
| Date: |
9/10/2008 12:05:39 PM |
| Comment: |
Between [PHI Redacted], [PHI Redacted] was treated
for prostate cancer at Loma Linda Medical Center.
[PHI Redacted] was treated with Proton Therapy. [PHI Redacted] made this
decision because of the successful record of
treatment with NO side effects.
As of this date, [PHI Redacted] had NO side effects, PSA continues to go down and the quality of life is as good as it ever was.
I firmly believe that this form of treatment
offers the best chance that the cancer victim
will not suffer the side effects of incontenance
and/or impotence and gives a good quality of
life during and after treatment.
After much research, I am very happy with this
choice and I encourage others to investigate
Proton therapy.
I feel it would be a tragedy to deny payment for
Proton therapy based on the cost. You cannot put
a price on QUALITY OF LIFE after treatment.
Thank you, Eugene H. Armstrong |
| Commenter: |
Sellers, Don
|
| Date: |
9/10/2008 12:54:11 PM |
| Comment: |
[PHI Redacted] underwent Proton therapy treatment for Prostate
Cancer in 2005. I learned of this cancer
treatment thru my dentist whose father-in-law had
the treatment 16 years earlier( & is still cancer-
free). After being approved for the treatment
and insurance coverage, [PHI Redacted] began treatment with
no side effects. It is amazing and I have
recommended this to some co-workers who have been
diagnosed and know of 2 who have done this
treatment with great success. [PHI Redacted] PSA has gone
down to 1.0 with no sign of cancer returning.
There were no side effects during or after
treatment. I feel it is very important to keep
proton treatment as a treatment for Medicare
patients. It is very effective with less side
effects than other treatments and should be made
available thru Medicare for those who take the
time to research treatments and discover this
method. It would be very sad to think that if [PHI Redacted]
cancer returns at a later date that Medicare
would not cover this treatment as I KNOW that it
WORKS! Please consider the mental well being of
cancer patients along with the physical. I feel,
as do former proton treatment patients,
that Proton should be available to any person in
the US who would choose it as it is effective! |
| Commenter: |
Williams, Paul
|
| Title: |
President |
| Organization: |
Paul Williams and Assoc. |
| Date: |
9/10/2008 12:56:15 PM |
| Comment: |
SUBJECT: Response to The Possibility of CMS Eliminating
Payment for Proton Beam Radiation Therapy for Prostate Cancer
[PHI Redacted] received proton beam radiation therapy Gy 18 months ago to
cure prostate cancer. [PHI Redacted] had daily treatments providing in
total about 80 Gy to prostate. If given on whole
body at one time, this would be about 10 times a lethal dose.
The radiation to good tissue was so low that [PHI Redacted] had no significant
negative side effects. Treatment was painless and there were no
restrictions on physical activity. [PHI Redacted] PSA before treatment
was 11 ng/ml and has continued going down. Today it is 1.5
ng/ml. About 100 other prostate cancer patients being treated
at the same time had similar results.
The dose distribution with protons to the prostate is
significantly better than treatment with neutrons or x-rays,
permitting more radiation to the cancer and a better cure rate
with no major adverse side effects in most cases. James Metz,
MD at the Abramson Cancer Center of the University of
Pennsylvania, compares the acute and long term side effects of
protons, photons (x-rays), and prostatectomy in a report, dated
June 29, 2006. His comparison is summarized below.
The acute complications of proton versus photon therapy are:
Grade 2 GU toxicity - Protons 0%, Photons 28%
Grade 2 GI toxicity - Protons 0%, Photons 35%
Either GU or GI morbidity - Protons 0%, Photons 53%
Acute complications of a prostatectomy are:
Hospitalization - 5 to 7 Days
Absence from work - 4 to 6 Weeks
Death - 0.3%
Pulmonary embolism/ DVT - 2.6%
Myocardial infarction or arrhythmia's - 1.4%
Wound Complications - 1.3%
Lymphocele - 0.6%
Surgical Rectal Injury - 1.5%
Long term complications for protons, photons and
prostatectomy are:
Impotence - Protons 30%, Photons 60%, prostatectomy 60%
Incontinence requiring a pad - Protons prostatectomy 32%
Bladder Neck contracture - Protons 0%, Photons 3%,
prostatectomy 8%
Chronic Cystitis - Protons 0.4%, Photons 5%, prostatectomy n/a
Grade 3 GU toxicity severe frequency - Protons 0.3%, Photons
2%, prostatectomy 36%
Grade 3 GI toxicity rectal bleeding requiring transfusion severe
pain - Protons 0%, Photons 7%, prostatectomy n/a
Rectal Stricture - Protons 0%, Photons 0.5%, prostatectomy n/a.
In addition to the above, the AMA in 2005 published a report
stating that those patients having a prostatectomy will have a
reoccurrence of cancer within 10 years.
Also, protons may treat tumors within 0.4 inches of nerves or
vital organs without damage to these items. This is not possible
when treatment is done with x-rays. This fact helps to confirm
that proton beam therapy reduces radiation to good tissue for
prostate treatment.
Yes, treating prostate cancer is more expensive with protons
than treatment with x-rays. Conversely, cost for treatment of
acute and long term complications with standard treatment are
substantial. This may involve treatment with chemotherapy,
radiation, hormones and more, plus a negative effect upon the
patient’s quality of life, lost time, hospitalization and other
complications. I do not know the cost of a prostatectomy, but
based upon the cost of [PHI Redacted] one day in the hospital to place a
stent in an artery ($40,000), the cost of a prostatectomy is
probably at least as high as proton therapy.
Some claim that proton therapy is experimental. Over 55,000
cancer patients have been treated with protons. 25 facilities in
the world now treat prostate cancer and about 50 other cancers
with protons in a clinical environment, and at least 15 more are
building or planned. About 200 insurance companies support
proton therapy for cancer including prostate cancer.
One of your responders stated that proton therapy costs
$200,000 per patient. Wrong. For 44 days of treatment to cure
[PHI Redacted]prostate cancer the cost was $56,000, paid by Medicare and
supplemental insurance company.
Some claim that the 5 hospitals in the USA providing proton
therapy are enough. Again, wrong. These facilities can treat, at
most, 12,000 patients per year. As estimate for today indicates
that about 300,000 cancer patients per year could benefit from
proton therapy. An oncologist at a large hospital stated to me
that due to the aging population, this number could reach
1,000,000 within 10 to 15 years.
Robert J. Marckini ([PHI Redacted])
published a book in 2006 entitled, “You Can Beat Prostate
Cancer and You Don’t Need Surgery To Do It.” This book was
written after studying proton and standard treatments and
discussion with many doctors and patients. His book is now one
of the best selling medical books on amazon.com. He also
established a prostate cancer support group, now numbering
over 3,500 patients.
In all due respect, if Medicare should eliminate payment for
proton therapy for prostate cancer, it would be a disservice to
patients, negatively effect their lives and in the long run,
increase Medicare cost. With further technology improvements
planned for existing and planned proton treatment facilities, its
cost will decrease.
Sincerely,
Paul .C Williams |
| Commenter: |
Becker, Irving
|
| Title: |
Retired CEO |
| Organization: |
Food Safety Concern |
| Date: |
9/10/2008 1:51:01 PM |
| Comment: |
Proton beam therapy for prostate cancer: Proposed
as means to concentrate radiation therapy and
reduce side effects. Very high upfront cost to
build these facilities and thus only at very few
facilities. For prostate cancer treatment, no
current comparative trials comparing to usual
therapy.
My response to this issue:
[PHI Redacted] was treated for prostate cancer at the Loma
Linda University Medical Center in January to
March 2004. [PHI Redacted] had a PSA of 5 and a Gleason Score
of 3+2 for a total of (5). [PHI Redacted] biopsy showed cancer was a stage T1C. [PHI Redacted] prostate was enlarged
to about 80 grams.
[PHI Redacted] had 40 proton treatments and PSA has
continued to decline and is now 0.2 after 4 and a
half years. Following Proton therapy treatment [PHI Redacted] no side affects from the treatment. [PHI Redacted] take Flomax and Finasteride (Proscar) to
offset the normal issues of an enlarged prostate.
Proton therapy has cured [PHI Redacted] prostate cancer and
allowed to have a normal life without urinary
or sexual side affects. [PHI Redacted] very thankful that was able to have this proton therapy versus other
options that usually have life changing negative
side affects.
Irving L. Becker |
| Commenter: |
Bayko, John
|
| Date: |
9/10/2008 2:42:36 PM |
| Comment: |
My Perspective [PHI Redacted] Concerning Medicare
Funding of Proton Beam Therapy
[PHI Redacted] I submit the following for your
consideration.
Prior to selecting PBT, [PHI Redacted] researched, read books
on different modalities, and talked with many
former PBT patients. Some of them can be
contacted by phone or e-mail here:
http://www.protonbob.com
After treatment, [PHI Redacted] had one minor side affect
which resolved in two days (blood in urine …
checked by cystoscopy.) The opinion of the
radiation oncologist is that it was the normal
process of blood cells renewing themselves.
[PHI Redacted] feel well and able to maintain the level of
energy and good general health that [PHI Redacted] had before
the Proton Beam Therapy.
I have read with dismay of the side effects
suffered by those who had surgery. A patient my
family knows had brachytherapy. Due to a seed
moving where it was not supposed to go, this man
nearly lost his life. Instances like this
reinforced [PHI Redacted] decision to choose PBT.
[PHI Redacted] incurred considerable personal expense
traveling 6000 miles round trip to the PBT
facility. Why did [PHI Redacted] choose to do that when a
world renowned IMRT center was only 100 miles
from home? It was because of the excellent
results, with few side effects, expressed in many
testimonials for PBT and because of research.
Further, it was because [PHI Redacted] had a right nephrectomy
in [PHI Redacted] and nephrologist recommended that [PHI Redacted]
not choose IMRT because of side effects.
The cost of [PHI Redacted] treatment to Medicare was not the
total of the charges submitted by the Proton
Center. It was 80% of the Medicare “approved
charges”. The difference was significant.
Medicare has been at the forefront of providing
medical care for seniors. Regardless of a man’s
age, it is imperative that he be given a chance
at a full and healthy life.
If you were to be a candidate for treatment of
prostate cancer, what would you recommend that
Medicare do?
Please consider the material I have included
here – when making a decision on continuing
Medicare funding of Proton Beam Therapy.
Thank you.
John S. Bayko
|
| Commenter: |
Cory, Charles
|
| Date: |
9/10/2008 6:05:03 PM |
| Comment: |
In [PHI Redacted] developed prostate cancer and
researched all the different treatments and
decided, without a doubt, on Proton Therapy. [PHI Redacted] now cancer free and so thankful that
Medicare and Blue Cross covered the cost. It is
an absolutely marvelous treatment. No Hospital
stay, no discomfort and no side effects. I have
many friends who did other treatments and almost
every one suffered from side effects such as
incontinence and impotency, which creates more
expense and follow-up treatment and surgery.
Please continue funding the Proton Therapy cure
for cancer. Thank you.
Charles Cory
|
| Commenter: |
Moody, Robert
|
| Date: |
9/10/2008 6:51:52 PM |
| Comment: |
[PHI Redacted] a Prostate Cancer Survivor. [PHI Redacted] had Proton
Beam Radiation on Prostate and writing to
encourage you to continue financial support for
this type of treatment that I would say is
superior to all others. [PHI Redacted] Family Physician
suggested that [PHI Redacted] investigate Proton Beam
Radiation when it was proven that [PHI Redacted] had
aggressive cancer of the Prostate through
biopsies by Urologist. [PHI Redacted] purposely did not
chose Surgery due to a disastrous, near death,
encounter with surgery on a poisonous, infected
Gall Bladder. [PHI Redacted] was aware of radiation burns from
X-Ray Radiation. I talked with men having had
Proton Beam Radiation and they all related
positive experiences. I have had 35 years
experience as a Research Engineer in Major
Electronic Instrumentation Companies so I applied
good research methods to find the best solution
for [PHI Redacted] need. [PHI Redacted] was grateful to travel 500 miles
and be a short term resident for 8 weeks of
treatment. [PHI Redacted] not experienced any side
effects after 5 years from treatment. [PHI Redacted] PSA has
been near zero for over 4 years. I am very
grateful that Proton Beam Radiation was
recognized for its quality treatment and covered
by Medicare. I encourage you to continue that
coverage. |
| Commenter: |
Becker, Irving
|
| Title: |
Retired CEO |
| Organization: |
Food Safety Concern |
| Date: |
9/10/2008 6:53:12 PM |
| Comment: |
Ablation for atrial fibrillation: If medication
is not effective or not tolerated for atrial
fibrillation, a nonsurgical procedure called
catheter ablation may be chosen. Focal and
circumferential catheter ablation for atrial
fibrillation is still being studied in
investigational trials but may be done in
selected patients to try to cure atrial
fibrillation. Is the evidence adequate to
demonstrate health benefits in the patients who
receive the procedure?
My response to this issue:
[PHI Redacted] was treated for atrial fibrillation by Dr.
[PHI Redacted] at the Cleveland Clinic in April,
[PHI Redacted] by the use of focal and circumferential
catheter ablation. [PHI Redacted] was 66 years old at the
time, and was otherwise in health
[PHI Redacted] had recurring and chronic atrial fibrillation
for about 5 years preceding the ablation. [PHI Redacted] took
a number of different drugs to control the Afib,
but all of them made [PHI Redacted] sick and prevented from living a normal and active life. [PHI Redacted] could
not easily walk up stairs or play any favorite sports such as tennis, hiking, camping,
etc.
The circumferential catheter ablation immediately
returned [PHI Redacted] to normal sinus rhythm and been in normal sinus rhythm for over 5 years
since the ablation. The ablation basically gave
[PHI Redacted] life back. The drugs were not able to do
that[PHI Redacted]. For [PHI Redacted] circumferential catheter
ablation was a life saver.
[PHI Redacted] 71 now, and about a month ago [PHI Redacted] was under
considerable stress. For the first time since
the ablation [PHI Redacted] had a short bout of Afib. It was
treated with Propafenone HCL (Rythmol) and immediately returned to normal sinus rhythm
again. [PHI Redacted] cardiologist believes it is likely will able to stop taking Rythmol in month or so.
It is very important to [PHI Redacted] to maintain sinus
rhythm without taking heart rhythm drugs as they
all have serious and harmful side affects.
[PHI Redacted] very thankful that was able to have
circumferential catheter ablation so could
return to normal sinus rhythm and enjoy an active
and healthy life style.
Irving L. Becker |
| Commenter: |
Hallock, Lowell
|
| Date: |
9/11/2008 12:32:15 AM |
| Comment: |
[PHI Redacted] was diagnosed with prostate cancer in [PHI Redacted]. [PHI Redacted]
doctor recommended proton therapy treatment. [PHI Redacted]
accepted that advice. [PHI Redacted] received the 8-week
treatment and feel that it is by far the best
there is available today. [PHI Redacted] PSA is checked every
6 months by Urologist and it has remained
under 1.0. [PHI Redacted] was completely satisfied with every
aspect of treatment and would not hesitate to
recommend proton treatment to anyone diagnosed
with prostate cancer. |
| Commenter: |
Lee, Arthur
|
| Title: |
Partner |
| Organization: |
Wellington Orthopedics and Sport Medicine |
| Date: |
9/11/2008 9:47:58 AM |
| Comment: |
I have been a practicing Orthopedic Surgeon
performing total hip arthoplasty for over 21
years. The BHR resurfacing arthoplasty
represents a dramatic improvement in this
proceedure. The BHR is a total hip in that both
the acetabulum and femoral head are resurfaced
and therefore it does represent a "stop gap"
type proceedure. In actually the longevity of
this operation is almost identical to convential
total hip replacement. However, the BHR
patients have less bone removed, recover faster,
have less pain, a lower dislocation rate, and
higher overall patient satifaction. It is
clearly the superior operation and I perform
this proceedure on all patients who are
candidates for it because of its superiority.
It would be a travesty not to have this
proceedure available to our Medicare and
Medicaid population
Sincerely, Arthur F.Lee M.D. FACS
|
| Commenter: |
Ronald, Bruce
|
| Title: |
Emeratus Professor of Chemistry |
| Organization: |
A retired private citizen!!!!!!!!!!!!!!!!!!!!!!! |
| Date: |
9/11/2008 2:48:26 PM |
| Comment: |
Proton Beam Therapy is the most effective method
for treatment of prostate cancer. It has the
best statistics for complete recovery without the
serious side effects that are characteristic
of 'seeds, surgery, and x-rays'. [PHI Redacted] a walking,
completely functioning testament to the success
of proton beam therapy treatment. It would be a
tragedy if future generations of prostate cancer
victims were denied this form of treatment. In
essence such denial sentences future prostate
cancer suffers to a life of misery and pain. I
know this for a fact because my friends and
neighbors who chose other methods of treatment
currently suffer from their sides effects, they
feel embarrassed in public and suffer from
continuous pain. As the agent amd gardian of
health care for the aged medicare and its minions
OWE it to the men of this nation to continue to
support proton beam therapy as a treatment option
for prostate cancer. |
| Commenter: |
Zenz, Joe
|
| Date: |
9/11/2008 6:41:33 PM |
| Comment: |
Proton Treatment for Prostate Cancer
[PHI Redacted] recently
completed 45 proton treatments for prostate
cancer. [PHI Redacted] cannot express the gratitude for
being able to receive this treatment. [PHI Redacted] NO
side effects from this treatment. NONE. I talked
to friends that had surgury for prostate cancer
and and still wearing diapers 3 years later. I
talked to men who have incontient problems and
are impotent. [PHI Redacted] NONE of this problems.
Without Medicare many of us could not have this
treatment. I urge whomever is voting on this not
to discontinue this coverage. |
| Commenter: |
Braren, Warren
|
| Date: |
9/11/2008 9:40:18 PM |
| Comment: |
Eliminating Medicare coverage for the treatment of prostate cancer with proton beam therapy is very ill-advised. Attention instead should be to bring down the cost of treatment in the years ahead.
After months of careful investigation in [PHI Redacted], [PHI Redacted] chose to have prostate cancer treated with protons at Loma Linda University Medical Center. Why? [PHI Redacted] lead a very active life and wanted to avoid debilitating side effects that not only would affect life going forward but that of wife. [PHI Redacted] made the right choice. Except for some slowing of urination, which possibly is due to aging anyway, [PHI Redacted] side effect free.
Cancer has been on my agenda for many years at no small cost to myself. I was a director of the broadcast industry's Radio and Television Codes heavily involved in the self-regulation of TV advertising. In 1969, I blew the whistle on cigarette advertising before Congress leading to the legislation banning cigarette commercials from radio and TV. As a result, the broadcast industry lost countless of millions of dollars and I lost my broadcast career but many lives were saved.
Why do I mention this? Because money is not the sole determing factor when decisiona on health issues are involved. Medical coverage and the treatment method impact one's health and lifestyle for years to come. Decisions have to be made based upon the quality of treatment, its outcome and minimal side effects - not just the cost. In that regard. proton beam therapy for prostate cancer ranks at or near the top. [PHI Redacted]
|
| Commenter: |
Kelley, Darlene
|
| Date: |
9/12/2008 7:14:45 PM |
| Comment: |
I am not medical never have been nor will I ever
be but what I do know from experience. [PHI Redacted] was diagnosed with prostate cancer over
two years ago. He weighed many options but the
only one that made sense to him was Proton
therapy. He had proton and photon treatments.
He is doing great. I would hate for Medicare to
discontinue the coverage of proton therapy. [PHI Redacted] has no side effects never any
incontinence, no pain. Feels great.
We have/had friends who used other methods of
treatments and [PHI Redacted] has not experienced any
of their side effects. They have had problems
with incontinence and their sex life wasn't all
that great after treatment.
Please let the person with the prostate cancer
make the decision as to what kind of treatment is
best for them. Just knowing that they have
cancer is a hard pill to sollow and then be told
they can't have the treatment they want. |
| Commenter: |
Williams, Paul
|
| Title: |
President |
| Organization: |
PTher |
| Date: |
9/12/2008 9:59:42 PM |
| Comment: |
There is an error in my comment The paragraph "In addition to the above, the AMA in 2005 published a report stating that over one third of those patients having a prostatectomy will have a reoccuranceof cancer within 10 years."
' over one third" was not included in the submittal. Sorry for the error. PCW |
| Commenter: |
GENUINO, RAFAEL
|
| Title: |
D.V.M. |
| Organization: |
(retired) USDA, FSIS, IP, FOREIGN PROGRAMS |
| Date: |
9/13/2008 4:58:23 AM |
| Comment: |
I am a retired USDA Veterinary Medical Officer
(Foreign Programs Officer) [PHI Redacted]. [PHI Redacted] was treated succesfully by proton
beam radiation with practically no untoward
effects or complications. [PHI Redacted] In contrast, [PHI Redacted] had radical
operation(removal of prostrate) at Sloane-
Kettering Memorial Hospital. He had so many
complications and after effects and worst of all,
he became impotent. He had to undergo further
expensive surgeries and treatments at Cornell
Medical Hospital in New York so he could be
intimate with his wife again. His quality of life
was severely affected by the surgical removal of
his prostrate. Two years later, his prostrate
cancer showed up again and was successfully
treated by proton beam radiation at Loma Linda.
[PHI Redacted] proton beam treatment was over four years ago
and psa is now 0.6 and prostrate shrunk
considerably that urine flows easily and
normally. [PHI Redacted]
Your plan to stop reimbursing proton beam
treatment expenses will be a great mistake and
will be a step backward to more humane treatments
of cancer. Quality of life must be considered in
your decision. Thank you. |
| Commenter: |
Metzler, Bruce
|
| Date: |
9/13/2008 10:55:14 AM |
| Comment: |
[PHI Redacted] was diagnosed with prostate cancer in July of [PHI Redacted] and spent
six months analyzing all the treatment options (including
surgery, IMRT, proton beam therapy and seeds), deciding on
Proton Beam Therapy. [PHI Redacted] decision was heavily weighted by the
probability of the side effects from the various modalities,
possibly resulting negative effects on life style. [PHI Redacted] finished treatment at Loma Linda Medical Center in March of [PHI Redacted]. To
date the treatment lived up to expectations - psa has
continued to fall and there have been no side effects, ie, no
incontinence, no erectile dysfunction and no rectal issues.
Needless to say [PHI Redacted] quite happy with decision to use Proton
Beam Therapy. |
| Commenter: |
Althoff, David
|
| Title: |
Retired |
| Date: |
9/13/2008 12:29:19 PM |
| Comment: |
|
This is in regards to Medicare possibly dropping
medicare recipients from receiving aid for Proton
Radiation treatments for prostate cancer. [PHI Redacted] After witnessing [PHI Redacted]
with prostate cancer at age 58; his surgery; and
his very painful death 7 weeks later I knew I
would never have surgery. [PHI Redacted] had surgery on his prostate 4 years ago.
It is now a horror story and it has come back.
His demise is in the near future. After much
research, I discovered the proton treatment. [PHI Redacted] had 35 treatments with NO SIDE EFFECTS.
The proton treatment seems to have a much higher
success rate than surgery with a very minimum
amount of side effects. And others that I have
spoken to who has had this proton treatment has a
very low PSA count many years later with a very
good quality of life. My reason for writing to
you is to please advise those requesting medicare
to drop this treatment that this is a very
successful treatment and should not be stopped.
If you know anyone who has protate cancer, please
have them check into proton treatments. This
treatment is saving [PHI Redacted] life! Thank you for
reading my letter. |
| Commenter: |
Young, Robert
|
| Date: |
9/13/2008 1:15:51 PM |
| Comment: |
|
Re: Proposal to stop Proton Medicare reimbursements:
[PHI Redacted] a Prostate Cancer survivor who owes life to having been
able to receive Proton Therapy seven years ago. [PHI Redacted] cancer,
Gleason 9, was sufficiently aggressive that precise pin-pointing of
the radiation beam was required. This was possible with Proton
Therapy, but not with conventional radiation. The result was not
only an undetectable PSA, but, very importantly, reduction of major
long-lasting side effects. |
| Commenter: |
Gift, Gary
|
| Date: |
9/13/2008 2:01:31 PM |
| Comment: |
I am commenting on the proposal to discontinue
reimbursement by Medicare for Proton Radiation
Therapy. [PHI Redacted] had Proton Therapy for prostate
cancer and the reason [PHI Redacted] selected Proton over all
the other options was because of quality of life
concerns. [PHI Redacted] experience is that [PHI Redacted] had zero
issues related to sexual, urinary or intestinal or
any other function during or since treatment.
I know other men who have had other
treatments surgery and radiation seed implants,
who have had significant and progressively
worsening issues since their treatments.
Not only is their quality of life deteriorating,
but their medical costs continue to mount as they
try to correct or lessen the symptoms of their
problems.
I believe it would be a mistake by Medicare to
discontinue Proton treatment reimbursement because
of the initial cost of the treatment. You need to
include the after treatment costs of the other
methods surgery, regular radiation and seed
implants, as well as the potential deprivation of
quality of life benefits for Proton patients.
In addition, continuing improvements in Proton
methods is bringing the costs down and the future
costs will be much more competitive. |
| Commenter: |
Medley, Edward
|
| Date: |
9/13/2008 2:12:52 PM |
| Comment: |
Proton Therapy Treatment for Prostate Cancer
Based on [PHI Redacted] experiance I strongly
urge CMS to continue to cover Proton Therapy
Treatment for prostate cancer. [PHI Redacted] PSA is down
to .05 and never had issues with incontinence
or impotence. [PHI Redacted] had no infection, bleeding or
pain. This treatment is far superior, and safer
than traditional surgery for the above reasons.
|
| Commenter: |
Kallstrom, James
|
| Date: |
9/13/2008 2:25:05 PM |
| Comment: |
[PHI Redacted] did a lot of research and consulted several
doctors before choosing proton therapy for
treating [PHI Redacted] prostate cancer. I think proton
therapy is best for many man due to the
minimalizaiton of side effects, which must be
taken into account in determining "cost", which
must surely decrease as time goes on.
Please do not take away this treatment choice |
| Commenter: |
Jehn, George
|
| Date: |
9/13/2008 3:50:43 PM |
| Comment: |
Dear Sir or Madam,
I cannot fathom the proposal to disallow Medicare
reimbursement for Proton therapy treatment. This
issue should not be about the cost of the
treatment, but rather its effectiveness and lack
of side effects, which results in a much better
quality of life for the cancer patient. I watched
[PHI Redacted] lose all of his quality of life after
having prostate removal surgery no more fishing,
golf, or anything he used to enjoy tremendously.
When [PHI Redacted] was diagnosed decided upon proton therapy
because of 1) it's overall effectiveness and 2)
because of minimal side effects.
[PHI Redacted] received proton treatment at Massachusetts
General Hospital for prostate cancer over three
years ago. [PHI Redacted] PSA was 4.7 before treatment and as
of last test had decreased to 1.2, with no side
effects whatsoever.
The issue here should NOT be about cost, because
if you remove that from the equation, the overall
best and most effective option for the treatment
of prostate cancer is proton therapy.
The money saved via this poorly-thought-out
proposal would be better spent going after doctors
who convince unknowing, uneducated patients to
undergo needless surgery, or surgery where it is
quickly discovered that the patient needs some
form of radiation treatment because the Medicare
paid for surgery did not remove all the cancer.
You should be ENCOURAGING patients to receive
proton therapy rather than trying to remove this
option from the acceptable Medicare treatments.
This proposal is a giant step backwards.
George Jehn |
| Commenter: |
Bates, Christopher
|
| Date: |
9/13/2008 4:00:10 PM |
| Comment: |
RE: Medicare/Medicaid Coverage of Proton Therapy
for Treatment of Prostate Cancer
There is no question in my mind that proton
therapy offers the best available treatment
option for men diagnosed with early- or
intermediate-stage prostate cancer. Medicare and
Medicaid should continue to grant full coverage
to these treatments. This will also help ensure
that most private insurance companies continue to
cover this proven therapy – an important fact for
those of us who have not yet reached retirement
age. I hope HHS will take the educated patient’s
perspective into account when making its decision
on this matter.
[PHI Redacted] I learned
about this option by chance and word-of-mouth.
Specialists offering alternative treatments don’t
like to talk about proton therapy or have done
little to inform themselves about it. They leave
it up to motivated patients interested in their
own well-being to do the research. [PHI Redacted] urologist
who diagnosed [PHI Redacted] was more objective than many I
have heard about from my friends on the subject
of proton therapy. He said he had heard of it
but did not know a lot about it, encouraged research and was genuinely neutral in his
recommendation of treatments.
I extensively researched proton therapy and
compared it to the many alternatives[PHI Redacted]. I discovered there are lots of
studies on surgical and traditional radiation
options, but most are based on what most people
would consider to be small patient sample sizes –
300 to less than 1,000 in most cases. Further,
most of these studies were sponsored by medical
institutions with a vested interest in the
therapy being studied.
The long-term survival rates of patients in these
studies were roughly the same for all of the
analyzed treatments, but the frequency of
undesirable side-effects was high, quite variable
and affected significantly by the choice of
physician who performed or managed the
treatment. [PHI Redacted]
In contrast to photon therapy, proton therapy is
performed at only a few facilities in the United
States, is comparatively “new,” and not
surprisingly has fewer published studies to
document its growing success. There is a rather
extensive study published by Loma Linda that
should be closely reviewed. It documents that
proton therapy for prostate cancer patients is
producing results equivalent or somewhat better
than those for IMRT and other more widely
practiced radiation therapies.
In addition, I encourage CMS to carefully review
the just-released Harvard study that is mentioned
in one of the comments posted in this online
comment section of the HHS website. That study
covered 1,450 patients treated between 1974 and
2001 and controlled for age, year of treatment,
site of treatment, and cancer histology.
The Harvard study found a remarkable 50 percent
lower incidence in secondary malignancies in
proton patients than in those who had received
photon radiation treatments. Apart from the
lower frequency and intensity of post-treatment
side-effects, this is one of the important
claimed benefits of proton therapy – which now
has been documented in a solid, peer-reviewed
study.
[PHI Redacted] recently
completed therapy at the Florida Proton Therapy
Institute with very positive results and an
exceptional experience: no pain, quality care,
accessible physicians and nurses, and
professionals who were eager to explain proton
therapy and its likely impacts. [PHI Redacted] was able
to continue a very active telecommuting work
routine throughout 8 weeks of proton therapy
and maintain usual, active lifestyle
throughout.
With average life expectancy rising and earlier
diagnosis of prostate cancer occurring, the
economics of proton therapy has become clear.
This miraculous treatment option should be
encouraged and fully funded. Proton therapy is
good medicine and good public policy. HHS would
not have placed this therapy on its covered list
previously if it did not agree with this
conclusion.
Proton therapy is both reasonable and necessary.
Thousands of patients who have experienced it
believe this is true and there are recent, valid
studies that show the genuine immediate and long-
term benefits of this therapy in comparison with
other alternatives.
Thank you for considering these comments.
Sincerely,
Chris Bates |
| Commenter: |
Fisher, Gerry
|
| Title: |
Director of Purchasing |
| Organization: |
Precoat Metals, a division of Sequa Corporation |
| Date: |
9/13/2008 5:10:14 PM |
| Comment: |
| I watched [PHI Redacted] suffer incontinence,
impotence, and urethra blockage following
prostate surgery. So, when [PHI Redacted] was diagnosed, I
was determined to find a better therapy. I
quickly learned that all of the prostate cancer
therapies have comparable cure rates, so my quest
was for the one that would preserve quality of
life. [PHI Redacted] had consultations with some of the best
doctors practicing each therapy - [PHI Redacted] at Northwestern University Med. Center
for open surgery, [PHI Redacted] at the Henry
Ford Hospital in Detroit for robotic laparoscopic
surgery, [PHI Redacted] at Washington
University Med. Center in St. Louis for hand
laparoscopic surgery, and [PHI Redacted] at
Washington University Med. Center for IMRT and
Bracytherapy. All of these doctors said that
theirs' was the best therapy for prostate cancer,
but none could give assurance that [PHI Redacted] would not
suffer the life-changing side-effects [PHI Redacted] was
trying to avoid. Also, none of these doctors
could produce data on the percentage of patients
using their therapy that had these side-effects,
and they would not provide access to former
patients that could testify on the subject.
Things were different when I investigated proton
therapy at Loma Linda University Med. Center. Of
course, Loma Linda doctor would not rule out
the possibility of impotence or incontinence, but
they had a 15 year study that showed outstanding
results. In addition, I found a pool of hundreds
of past patients in the Brotherhood of the
Balloon that gave compelling testimony to
proton's effectiveness and lack of morbidity. [PHI Redacted]
chose protons at Loma Linda, and underwent
treatment from October [PHI Redacted] to January [PHI Redacted]. [PHI Redacted]
not had the slightest incontinence or
impotence, and PSA has fallen steadily. I
know scores of past proton patients, and don't
know a single one that has suffered this
morbidity, and has not had curative results. I
also know many patients that had very advanced
cancer that was written-off by the other therapy
practitioners, but were effectively treated at
Loma Linda. There is a reason that large
investments are being made in new proton centers -
this therapy offers superior results. If
allowed to flourish, proton treatment will be the
standard treatment for prostate cancer in the
future. You would be making a grave error to
disallow Medicare coverage for proton treatment
of prostate cancer. |
| Commenter: |
Haley, Shirley
|
| Date: |
9/14/2008 9:07:12 AM |
| Comment: |
|
[PHI Redacted] After checking out several alternative
treatments [PHI Redacted] decided on Proton. There are very
few side effects with this treatment. Just a
little red spot on one hip was the extent of [PHI Redacted]
side effects. When compared with what [PHI Redacted]
urologist was recommending (hormone shots and
radiation) this was a breeze! Hormone shots were
not necessary. At one time [PHI Redacted] PSA was 29 (after a
biopsy) and now it is 2.9 and will continue to go
down. [PHI Redacted] was a 7 Gleason Score. [PHI Redacted] 80 years old
and am glad that did not do the "watch and
wait" theory either. The treatment was great and
so were the people at the Florida Proton Center.
I would recommend Proton treatments for anyone
with cancer. |
| Commenter: |
Krutenat, Richard
|
| Title: |
Ph.D., MIT, Materials Science/Engineeing |
| Organization: |
personal |
| Date: |
9/14/2008 9:18:58 AM |
| Comment: |
|
I am concerned that CMS will remove proton
therapy from coverage by medicare, based on the
biased and uneducated responses of many
oncologists and radiologists who favor IMRT. Many
of the comments I have read so far demonstrate a
lack of knowledge about the advanced proton
procedures and a failure to take into account the
reports of patients on the success of their
treatment. Patient follow up has been done and is
continuing to be done contrary to the opinions of
several commentors and extensive documentation is
available. Advances have been made in proton
therapy and accurate beam modulation is done,
specifically designed for each patient, and
prostate location is also done with x-ray
location by gold fudicial markers during each
exposure and after exposure as well. As a
scientist familiar with radiation effects in
materials, selection of proton therapy based on
Bragg effects was a fundamental in [PHI Redacted] selection
of proton therapy. Costs of proton therapy are
coming down, and research to provide advanced
treatment with IMRT sized machines is underway. I
believe strongly that to stop reimbursement for
proton therapy is a serious mistake. Please do
not stop coverage! |
| Commenter: |
Gaskin, Don
|
| Date: |
9/14/2008 11:57:04 AM |
| Comment: |
I am [PHI Redacted] and a retired air
Force veteran. I strongly oppose the emlimina-
tion of funding of Proton Therapy from Medicare.
[PHI Redacted] a one year survivor who had Proton Therapy.
[PHI Redacted] experienced no significant side-effects during
treatment nor after. [PHI Redacted] was able to continue a
fairly active lifestyle including cycling. [PHI Redacted]
rode bicycle almost 800 miles during treatment
which [PHI Redacted] could not have done under any other
treatment protocol I know of.
Please consider lifestyle and quality of life
factors in your evaluation and keep funding
Proton Therapy as it is the best overall package
today in my view. |
| Commenter: |
Black, Dwight
|
| Date: |
9/14/2008 1:25:02 PM |
| Comment: |
It is imperative that proton therapy be covered by medicare! Opponents(all who seem to be motivated by reduction in the income from their specialties) state things like "brachytherapy has equal result to proton therapy". No one has had a seed migrate with protons! |
| Commenter: |
Lucietto, Ledo
|
| Date: |
9/14/2008 8:35:08 PM |
| Comment: |
Response to question of effectiveness of Proton
Treatment: Proton treatment has Successfully
treated prostate Cancer in 2004. [PHI Redacted] I am definitely a proponent of
Proton Treatment. Thank You |
| Commenter: |
Schaefer, charles
|
| Date: |
9/14/2008 11:36:55 PM |
| Comment: |
Regarding the funding of proton radiation treatment for prostate cancer: Consideration should be given to the fact that many of the patients were not acceptable for other cancer treatments because of the higher grades of their cancer or their complications like organs out of place or a stroke candidate. These higher risk patients could be accepted for proton treatment. Other treatments could accept only the low risk patients so the data must take this into consideration, Then the efficiency of proton radiation will be truly indicated.
|
| Commenter: |
Blaney, Charles
|
| Date: |
9/15/2008 2:05:22 AM |
| Comment: |
[PHI Redacted] was diagnosed with Prostate Cancer
and thought it was the end of the world. [PHI Redacted]
doctors told [PHI Redacted] to "pick poison"; i.e.
surgery, seeds, or radiation. All have lasting
side effects especially incontinence and
impotance. After careful study [PHI Redacted] found out
about and chose Proton Beam Therapy. [PHI Redacted] Cancer cured
and absolutely no lasting side effects. All
treatments are not equal. Proton Beam Therapy
is by far the best. Please do not deny Medicare
coverage for this treatment.
Thank you,
Charles BlaneyI though |
| Commenter: |
Brinning, Ronald
|
| Title: |
Member |
| Organization: |
Brotherhood of the balloon |
| Date: |
9/15/2008 9:32:55 AM |
| Comment: |
Proton beam therapy is definatly saving lives in all age groups from babies to 80 year olds. Some procedures are not even possible especially on small children except with Proton beam therapy. The almost total lack of side affects alone is worth keeping this mode of treatment funded. It would be a crime against mankind to drop Medicare payments for this mode of treatment. Charges for Proton Therapy will no doubt go down as more facilities become available. Several sights are planned for and or being built now. Consider this as an argument to do all we can to promote Proton Therapy. Back in the 70's solar energy was trying to make it's place in our country as a partial solution to world oil shortages. They said Solar Cells would come down in cost with more usage. If we would have nurtured that technology think how it would be helping us now with the cost of energy. I'm sure the same kind of people who put down Proton Therapy today would have put down Solar Energy back in the 1970's. In a word, those kind are all about greed and care nothing about the general welfare of mankind. |
| Commenter: |
Doran, Carlos
|
| Date: |
9/15/2008 11:20:30 AM |
| Comment: |
To Whom It May Concern:
[PHI Redacted] Almost [PHI Redacted] years ago, [PHI Redacted] began
proton radiation treatment at Loma Linda
University Medical Center for prostate cancer. [PHI Redacted]
started with a PSA of 10+, today it is .2 . [PHI Redacted]
cancer was considered stage 3. Today [PHI Redacted]
prostate cancer free and one of thousands of
men that have been treated and healed with proton
radiation at Loma Linda University Medical
Center. I have friends that chose different
forms of treatment. All are impotent, and some
will wear diapers the rest of their lives. [PHI Redacted]
came through the treatment with basically NO side
effects. Which treatment do you think is better
for your senior years???
Sincerely,
Carlos M. Doran |
| Commenter: |
Biddle, Ray
|
| Date: |
9/16/2008 10:40:54 AM |
| Comment: |
[PHI Redacted] I
believe that proton therapy should continue to be
covered by Medicare. [PHI Redacted] received news that [PHI Redacted] had prostate
cancer. [PHI Redacted] elected to undergo proton therapy.
Other than a brief period of urinary frequency
while undergoing the therapy, [PHI Redacted] had no side
effects and there has been no impact on the
quality of life. Moreover, PSA has improved
dramatically. If [PHI Redacted] had been age 70 or more, [PHI Redacted]
could foresee not having undergone proton therapy
(or even surgery). |
| Commenter: |
Schwager, Frederic
|
| Title: |
Retired |
| Date: |
9/16/2008 2:32:27 PM |
| Comment: |
The case for proton therapy can readily be made
in all three areas currently being discussed,
i.e., cost, effectiveness, and quality of life
during and after treatment.
Cost - The perception is generally accepted and
widely disributed that proton therapy is
significantly more expensive than other forms of
therapy. However, I have yet to see an analysis
of costs which includes all cost factors, such as
hospitalization, recovery, follow up,
medications, treatment of side effects, treatment
of ongoing adverse conditions, etc. The costs
noted are largely borne by Medicare and private
insurance. Loss of income, however, is a
significant cost which is borne by the patient.
[PHI Redacted] I met a
number of patients who continued during the
entire treatment process, stopping at the
treatment center either on the way to or from
work.
I suspect that if a complete and honest study of
costs were done it would show proton therapy to
be cost-competitive with other treatments.
Effectiveness- The usual mantra from "the
establishment" is "There is no side by side study
which shows proton therapy to be superior to
other treatments." The obvious answer is that
there also is no side by side study which shows
that other treatments are superior to proton
therapy. There is plenty of data, however, which
shows cure rates to be about the same for all
availabe treatments, including proton therapy.
The claimed advantage of proton therapy is in a
large reduction of side effects. There is a
growing mountain of data supporting this claim,
and anecdotal evidence also supports the
superiority of proton therapy in greatly reducing
side effects. Every proton therapy patient I
know has stories about being free from side
effects while friends or relatives who have
undergone other treatments are permanently
impotent or incontinent or require follow up
procedures, or etc., etc., etc..
Quality of life - Proton therapy delivers a
superior quality of life during and after
treatment. During treatment there is no
hospitalization, no restricted activities, no
pain, no medications, no anesthetics, no
catheters, no invasive procedures. Life goes on
as normal. For some patients the is no treatment
facility near home, temporary housing must be
arranged.) A typical treatment requires the
patient to be at the treatment faclity for
approximately 1/2 hour per day. The rest of the
day is free to do whatever he wants to do. Play
golf run errands, work, volunteer, visit, go to
the gym, or whatever. When the course of
treatments is completed, follow up consists of
routine visits to a local urologist for psa tests
and a DRE. It's just take your last treatment
and return to life as normal. Contrast this to
other treatments, such as surgery, which requires
hospitalization, slow recovery at home,
restricted activity, follow-ups to remove the
catheter and deal with side effects
(incontinence, impotence, etc.) and loss of
earnings if you work.
Summary - When all the above factors are
considered, proton therapy is clearly a superior
treatment for prostate cancer, probably at equal
or less cost than other therapies, if all factors
are considered. I urge you to continue Medicare
coverage for proton therapy. |
| Commenter: |
Wyatt, Jim
|
| Date: |
9/16/2008 4:35:02 PM |
| Comment: |
"The prime function of government is the
protection of life and property."
Any government agency that is responsible for the
welfare of its citizens, should put its citizens
first especially with health care. I researched
what form of treatment would be best [PHI Redacted] for
nearly a year. I interviewed doctors that
provided all the treatments avalible [PHI Redacted]. I
believe it would be a grave error for medicare to
restrict any form of "successful life saving
treatment" that appears to to be only a money
driven drive that would dicriminate against the
elderly.
Respectfully,
Jim Wyatt |
| Commenter: |
James, DC
|
| Title: |
Lets Keep Proton Treatment For Prostate Cancer |
| Organization: |
Harmony Bay Publishing & Productions |
| Date: |
9/16/2008 4:39:02 PM |
| Comment: |
I have personally met a number of people who have had proton treatment for prostate cancer The level of vigorous physical activity those men demonstrated during and after their treatment, the sexual potency they reported and their lack of incontinence, and the benign nature of the treatment, should give pause to even the staunchest detractors. If we can send people to the moon, lets find a way to preserve this wonderfully humane treatment. Please.
|
| Commenter: |
Osberg, Fred
|
| Title: |
retired |
| Date: |
9/16/2008 6:31:04 PM |
| Comment: |
Many persons covered by Medicare are on fixed imcomes and can not or may not be able to afford the costs of Proton radiation treatment. By removing this benifit many people would have to choose a method of treatment that although is affective is plagued with many permanate side affects and in some cases do not elimate all traces of the cancer. Recurring cancer costs (in some cases) should be considered before a final desision is made to eliminate Proton coverrage. |
| Commenter: |
Brookes, Jr., Albert Sidney
|
| Title: |
none retired senior citizen |
| Organization: |
None |
| Date: |
9/17/2008 2:31:08 PM |
| Comment: |
Having read several books on prostate cancer and
talked with a number of friends with prostate
cancer, I believe that proton therapy is a very
viable treatment option for this type of cancer
and should be kept in the arsenal of treatment
options covered by Medicare and hence also by
many other insurance policies. For many men it
has the potential of less side results and even
has documented results of less side effects.
[PHI Redacted] urologist told [PHI Redacted] proton radiation therapy for
prostate cancer was highly experimental. This is
a case of either he does not know the literature
or his vision is obscured by NIH, not invented
here!
After reviewing all the options, [PHI Redacted] selected
proton radiation therapy as the best treatment
(least side effects) for prostate cancer[PHI Redacted].
|
| Commenter: |
Hart, Richard
|
| Date: |
9/17/2008 7:18:21 PM |
| Comment: |
I am deeply troubled by the proposal to remove
Medicare coverage of proton beam therapy for
prostate cancer.
[PHI Redacted]
Granted, many candidates for proton therapy
cannot take the time, nor would they have the
means for housing, if they cannot reach a proton
center for treatment on a daily basis. This is
why it is heartening to see growth in the number
of facilities available. Even more exciting than
the effectiveness of proton treatment for
prostate cancer is similar treatments evolving
for other cancers – some that presently have no
viable alternative.
My opposition to the proposal to remove proton
therapy from Medicare coverage is many fold:
-
If Medicare coverage for proton treatment
is discontinued, most other insurance providers
will likely follow suit. Since prostate
treatment is the mainstay of most of proton
therapy facilities, they may not be able to
survive financially. This will effectively
remove one of most effective options for, not
only prostate cancer, but also other cancers,
such as pancreatic, brain and brain stem, spinal
cord, pediatric cancers and potentially many
others as protocols are developed.
-
Five proton therapy centers are in
operation now with several in the pipeline for
the future. This will increase access to this
option to individuals as the word gets out about
its effectiveness and reduced side effects. The
proposal to eliminate coverage will likely kill
off these projects underway along with the
existing operating centers.
-
Effectively treating prostate cancer, as
a criterion, can not be evaluated without
consideration of the side effects and their
resulting affect on the patient’s quality of
life. This would be like discontinuing coverage
for prosthetic legs because the patient can still
use a wheel chair to get around.
-
From personal experience, this proposal
seems to be driven by urologists and conventional
radiation oncologists afraid of loosing
business. I frequently wonder if the time will
come when someone who has received bad side
effects from surgery or conventional radiation
will sue his urologist for not providing facts on
ALL of the options, specifically including proton
therapy, for cancer treatment.
-
The proposal to discontinue coverage for
proton beam treatment of prostate cancer is in
direct conflict with the popular “Stand Up for
Cancer” movement, supported by both presidential
candidates, to attack cancer of all kinds.
-
A significant percentage of “beam time”
in the operating facilities is dedicated to
research. This research will cease if the proton
centers close down.
-
Successful development of “one room”
proton beam equipment – which might ultimately
result in significantly lower costs for proton
treatment – would likely not continue if CMS
succeeds in their “effectiveness” argument for
current proton-beam treatment.
-
This proposal, coupled with a recent
recommendation to discontinue prostate
surveillance for men over age 70, regardless of
state of health, is age discrimination at its
worst. Proton therapy is an extremely viable
treatment for older men who would be ill advised
to undergo surgery but who would otherwise have a
long life expectancy. Where does CMS get off
determining the value of an older individual and
his quality of remaining life?
I urge CMS and Medicare to reject any proposal to
reduce coverage of proton beam treatment of
prostate cancer. The continued enjoyment of key
functions of life without compromise following
treatment for cancer is too valuable to disregard
as unimportant! |
| Commenter: |
Renzi, Sam
|
| Title: |
Pastor |
| Organization: |
Seventh-day Adventist |
| Date: |
9/17/2008 8:29:54 PM |
| Comment: |
Dear CMS
I understand that CMS may stop Medicare payments
for prostate cancer patients using proton
therapy. Please reconsider this drastic action
for the following reasons.
1. The COST of proton treatment is reasonable
compared to the total cost of other treatments,
during and after treatment. Experiments are soon
to be announced to bring the cost down by
reducing the number of treatments, and treating
more patients.
2. The QUALITY of life during and after proton
treatment is the big advantage.
3. MORE proton treatment centers are being built
or have plans to build making this treatment more
widely available—such as Oklahoma, Virginia,
Pennsylvania , Illinois, Florida, Atlantic City,
New Jersey San Diego, CA, Seattle, Birmingham,
Alabama, Ohio, Nassau, Bahamas, Sidney,
Australia, United Arab Emirates Germany etc. (I
read that about 40 proton centers are being
considered.) If it wasn’t successful why are so
many willing to invest millions of dollars? At
the Loma Linda University Medical Center,
patients have come from all 50 states and more
than 25 countries. Surely it will be more widely
available.
4 All prostate cancer treatments are equally
effective, but [PHI Redacted] chose proton because it is:
1.precise, 2 non-invasive , 3 fewer side effects,
4 better quality of life during and after
treatment.
I strongly urge that CMS take these factors into
consideration and continue to fund proton therapy.
Pastor Sam Renzi |
| Commenter: |
Staples, Robert
|
| Title: |
Mr. |
| Organization: |
Retired IBM |
| Date: |
9/18/2008 9:24:09 AM |
| Comment: |
|
Please continue medicare coverage for proton
therapy.
The cause of death on [PHI Redacted] death
certificate states "carcinoma of the prostate
gland". You may be assured [PHI Redacted] carefully checked
documented statistics and consequently had proton
radiation therapy at age [PHI Redacted] ending in June [PHI Redacted].
Today , over five years later [PHI Redacted] no residual
side effects and remain fully active with a
quality of life as good or better than before
treatment. (last psa was 0.04.) Should my son
of grandson have prostate cancer, please do not
deny them this superior treatment if they are not
among the wealthy.
To get the full cost (not just the initial
treatment), you need to use your medicare
database to see what the total (Medicare cost of
treatment) and all followup treatment for two,
three or five years is including hormones Dr.
visits as well as any followup treatment. In [PHI Redacted]
case a psa reading and digital rectal exam once a
year along with annual physical. (no
additional cost)
[PHI Redacted] had a choice to have protons with less
radiation going in with a burst of energy in the
tumor to destroy the cancer with zero radiation
beyond the tumor (that may effect vital organs),
and proton treatment was logical choice.
Please do not deny others this choice. |
| Commenter: |
Ford, Pamela
|
| Date: |
9/18/2008 11:04:43 AM |
| Comment: |
I have mailed this letter in its full form
anticipating that parts of this will have to be
deleted due to the "Posting Policy"...
I have no medical degree, but I have learned more
in the past few years than I ever thought I would
know about blood and medicine.
[PHI Redacted]
was diagnosed with ITP over 4 years ago and since
that diagnosis has endured numerous treatments
that have failed to control his severely low
platelet counts.
I am aware that this particular topic is
referring to the adult use of drugs like Nplate,
but please allow me to state a strong case
regarding why this drug is needed, has been
needed and will continue to be needed for adults
and children alike. Please note that limiting
access to patients by not covering its use would
hinder the progress that is being made in this
area of medicine.
[PHI Redacted] received his first IVIg 12 days after his
initial diagnosis, to which he had a severe
reaction. The 2nd infusion was less than 2 weeks
later, pre-treated to ease the side effects.
This form of treatment has, continued throughout
the 4 years as his “standard” emergency
treatment. He responds for 2-3 days and then
drops back down to what is considered
his “normal” platelet count of less than 10k.
High dose steroids failed next, followed by a
short therapy of Vincristin w/ Cyclosprine and
steroids. Short because after the second dose,
he suffered a life threatening paralytic ileus
reaction to the Vincristin. This information is
relevant because it shows his limits for future
types of treatments.
7 months after his diagnosis his spleen was
removed. [PHI Redacted] moved down the list of treatments,
almost in clinical order. The splenectomy
resulted in a recovery of counts in the 40k’s –
60k’s range for about a year before plummeting
back to his normal range again. This particular
year was a blessing for the mere reason that [PHI Redacted] who is an excessive, frequent and spontaneous
bleeder was free from his two and a half hour
nose bleeds for that year.
Once the year of “somewhat peace” was over, we
were in what seemed to be worse condition than
before. His body seemed to reject all
treatments. That year we tried Rituximab, 6MP,
Dapsone, and Cellcept.
His next treatment was a combination therapy of
high dose infusions of prednisone, IVIg and
WinRho injections supplemented by daily oral meds
of Decadron and Azathioprine. He received the
infusions every Wednesday because they only held
his counts for 2-4 days before they drop
dramatically. Each Wednesday appointment his
counts are less than 10k.
[PHI Redacted] doctors have told [PHI Redacted] on
numerous occasions that this is the worst case of
ITP they have seen at their hospital. The mix of
the persistently low count with the excessive
bleeding and the side effects to standard
treatments has been a challenge for all of us.
The doctors would consistently reach out to the
leading specialists. Their recommendations had
all begun to turn to the new thrombopoietin lines
of treatments like Nplate which gave us renewed
hope.
[PHI Redacted] is now in the pediatric clinical trial for
Nplate. He is showing great progress. All of
the treatments he has tried before were used “off-
label” to attempt to treat his ITP. THIS drug is
designed TO TREAT his ITP, not some other
disorder/disease/illness. Unlike the other
treatments, he has had NO side effects at all.
NONE. He is progressively getting his life back
and [PHI Redacted].
I am a member of the Platelet Disorder Support
Association. I communicate daily with parents of children with ITP as well as adults
that are currently in or were in one of the
clinical trials for this drug. We are excited
and anxious for this desperately needed drug to
become available for children and just as excited
that it is now available for adults. I am aware
that the “numbers” of patients with ITP are not
great, that the level of attention “our” illness
receives is much lower than some higher profile
illnesses. Please keep in mind though that the
effects are still the same. The life-threatening
risk of a brain bleed is no different if a
patient has low platelets due to ITP or due to
another illness with low platelets as a “side
effect”. The difference comes into play when you
are able to treat the “other” illnesses and the
platelet function returns. With ITP, there is no
other alternative than to treat the platelet
issue.
FDA’s job was and continues to be watching to
make sure these drugs are safe. It is my
understanding that data is coming in on a regular
basis to ensure that safety. That should not be
a concern for anyone beyond their group, it is
their expertise. There are many of us that are
and will continue to benefit from the use of this
drug. Please do not allow that number to be
limited by the lack of coverage some families
will need in order to obtain the treatments. In
my honest opinion, it just seems natural to me
that our government agencies would allow our
physicians to make treatment decisions with their
patients based on what is best for the patient.
FDA approving the drug might be viewed by some as
an agreement with that statement. Questioning
coverage determination seems to undermine all
parties involved (FDA, doctors and patients) and
at what expense? |
| Commenter: |
Walter, Patricia
|
| Title: |
Owner/Webmaster |
| Organization: |
Joint Health Sites LLC |
| Date: |
9/18/2008 1:20:27 PM |
| Comment: |
I want to support the discussion of Hip
Resurfacing and Medicare coverage of Hip
Resurfacing.
I am [PHI Redacted] a Patient
Advocate and Owner/Webmaster of a large Hip
Resurfacing Website called Surface Hippy.
http://www.surfacehippy.info
The website receives over 9000 unique visitors a
month and generates almost 100,000 page views a
month. It is the largest Patient to Patient Hip
Resurfacing Website and is consistently rated 4-
6th on Google for Hip Resurfacing.
A large number of patients that choose hip
resurfacing are in the 50 -70 age category. I
have a Patient Survey from the Yahoo Surface
Hippy Group posted on my website and you can see
that out of 855 patients that participated, 470
people were 50 years of age or older.
http://www.surfacehippy.info/survey/hipresurfacing
survey.php
Most of these patients only received one hip
resurfacing and will most likely need their other
hip done at some time in the future. That means
that they could easily be of Medicare age when
they need the second hip resurfaced. If Medicare
does not approve hip resurfacing, these people
will be forced to pay for their own surgeries or
travel overseas for their hip resurfacing.
[PHI Redacted] was 61 when had Hip Resurfacing and had to
travel to Dr. [PHI Redacted] in Belgium because [PHI Redacted] did
not have health insurance. [PHI Redacted] I certainly hope Medicare
will cover Hip Resurfacing[PHI Redacted].
[PHI Redacted] had a hip resurfacing and find it to be the
best bone conserving option for a hip
replacement. [PHI Redacted] an active person and chose a
hip resurfacing to remain active[PHI Redacted]. Hip Resurfacing is a viable
option for people over 65 years of age. Hip
resurfacing candidates are not chosen by their
age, but by the quality of their bones, their
activity level and their physical condition. Many
patients in the 60’s, 70’s and even 80’s receive
Hip Resurfacing overseas. It is an excellent
option for active people over 65 years of age.
As [PHI Redacted] a Patient Advocate and Owner/Webmaster of a
large Hip Resurfacing Website – I encourage
Medicare to support the discussion of Hip
Resurfacing and to cover the Hip Resurfacing
Procedure. |
| Commenter: |
Hartley, F
|
| Date: |
9/18/2008 2:50:50 PM |
| Comment: |
Proton Therapy is not invasive, has an excellent cure rate and does not have side effects. For most men this is the first choice of treatment. PROTON THERAPY:
To consider not covering proton therapy for prostate cancer is unconscionable. No other way can a man be successfully treated for this disease and not suffer the rest of his life. None from the effects of this therapy but many effects from any of the other treatments. Add the cost of other therapys the treating and caring for the many side effects Consider that and the cost of Proton Therapy is very comparable. |
| Commenter: |
Morlock, Patricia
|
| Date: |
9/18/2008 3:13:05 PM |
| Comment: |
I want to support the discussion of Hip
Resurfacing and the Medicare coverage of
Hip Resurfacing.
[PHI Redacted] had hip resurfacing surgery (BHR) from Dr
[PHI Redacted] in Honolulu in August and find it to
be the best bone conserving option for a hip
replacement. [PHI Redacted] an active person and chose a
hip resurfacing to remain active. [PHI Redacted] may need a
second hip resurfacing at some time in the future
and definitely think Medicare should cover the
surgery and procedure as did HMSA insurance.
[PHI Redacted]
Hip Resurfacing is a viable option for people
over 65 years of age. Hip resurfacing candidates
are not chosen by their age, but by the quality
of their bones, their activity level and their
physical condition. Many patients in the
60's, 70's and even 80's receive hip resurfacing
overseas. It is an excellent option for active
people over 65 years of age.
Thank you,
Patricia Morlock |
| Commenter: |
O''Malley, Paul
|
| Date: |
9/18/2008 4:12:05 PM |
| Comment: |
I would like to support the discussion of
covering hip resurfacing under Medicare. [PHI Redacted] Resurfacing is a
great procedure, and its appropriateness is not
determined by age, but rather by theindividual
patient's bone density and activity level. The
procedure is routinely done for patients older
than 65 in other parts of the world.
Thank you,
Paul O'Malley |
| Commenter: |
Brydon MD, William
|
| Date: |
9/18/2008 8:19:59 PM |
| Comment: |
My comments are in reference to the proposal
of medicare and medicaid to no longer pay for
proton radiation treatment for prostate cancer.
I am now retired but was a board certified
immunologist with a practice in allergy, asthma
and immunology. [PHI Redacted] biopsy
confirmed the diagnosis of prostate cancer. At
the onset of treatment PSA was almost 10
and Gleason score was 9.4. Although [PHI Redacted]
urologist admitted he knew little about protron
radiation therapy because articles about it did
not appear in the urologic literature, he refered
[PHI Redacted] for external beam conformational proton
radiation therapy. [PHI Redacted] results have been
excellent. PSA is now 0.2 and has been for
well over two years. [PHI Redacted] had no complications.
During the three years since treatment four of
my good friends have also had similar therapy.
All of them have had no significant
side effects and all lead active lives. During
this time also, however, five or more of my
friends have undergone other forms of treatment.
All of these have suffered one or more
complications/side effects, and one unfortunate
gentleman is now wearing a colostomy bag and
another a permanent supr-pubic catheter.
The medicare/medicaid proplem with this
therapy relates to cost. The initial cost of
proton radiation is somewhat greater, but when
surgeon fees, anesthesia fees, hospitilization,
drugs, lab work, etc is added up, the difference
isn't so much. The big difference is is the
treatment of complications. Proton therapy leads
to very few complications and of those the vast
majority are mild and require little or no Rx.
The amount of money paid by medicare and the
insurance company for the gentleman noted above
has cost more than the combined proton therapy
for [PHI Redacted] and my four friends. All of the costs of
therapy, including those that relate to
deterioration of life style must be considered.
[PHI Redacted]
Sincerely,
William L. Brydon MD
|
| Commenter: |
cepuran, Laura
|
| Date: |
9/18/2008 8:38:19 PM |
| Comment: |
I want to support the discussion of Hip
Resurfacing and the Medicare coverage of Hip
Resurfacing.
[PHI Redacted]
Hip Resurfacing is a viable option for people over
65 years of age. Hip resurfacing candidates are
not chosen by their age, but by the quality of
their bones, their activity level and their
physical condition. Many patients in the 60's,
70's and even 80's receive hip resurfacing
overseas. It is an excellent option for active
people over 65 years of age. |
| Commenter: |
Darr, John
|
| Date: |
9/18/2008 9:09:27 PM |
| Comment: |
I want to support the discussion of Hip
Resurfacing and the Medicare coverage of Hip
Resurfacing.
[PHI Redacted]
Hip Resurfacing is a viable option for people
over 65 years of age. Hip resurfacing candidates
are not chosen by their age, but by the quality
of their bones, their activity level and their
physical condition. Many patients in the 60's,
70's and even 80's receive hip resurfacing
overseas. It is an excellent option for active
people over 65 years of age. |
| Commenter: |
Winchell, Larry
|
| Title: |
Retired |
| Date: |
9/18/2008 10:43:21 PM |
| Comment: |
Proton Therapy for Prostate Cancer.
[PHI Redacted] completed proton therapy for prostate cancer in
May [PHI Redacted]. latest PSA was .04 which indicates
that [PHI Redacted] on the road to being cancer free which
is great news. During the
treatment and post treatment periods [PHI Redacted] not
had any quality of life issues (incontinence or
impotency). Many of my friends and acquaintences
who have had other types of treatments for
prostate cancer have not been so fortunate.
I strongly urge you to keep funding Proton
Therapy for prostate cancer. |
| Commenter: |
Rosenbaum, Karen
|
| Date: |
9/18/2008 11:57:57 PM |
| Comment: |
I hope the government will cover N-plate and the other new TPOs as treatments for ITP. So few treatments are available for those of us who have this platelet disorder, and these new TPOs sound so promising. |
| Commenter: |
Nowlin, Robert
|
| Date: |
9/19/2008 12:53:00 AM |
| Comment: |
|
I want to support the discussion of Hip
Resurfacing and the Medicare coverage of Hip
Resurfacing.
[PHI Redacted]
I definitely think Medicare should cover the
surgery and procedure. As an engineer I view the
resurfacing option as vastly superior in its
method of bone loading, and can envision where it
could contribute to better overall bone density
for an older person (this opinion is based on a
correlation to the NASA studies that show bone
density to be directly related to femur loading,
and loading with resurfacing would remain much
closer to standard anatomical approach).
Hip Resurfacing is a viable option for people over
65 years of age. Hip resurfacing candidates are
not chosen by their age, but by the quality of
their bones, their activity level and their
physical condition. Many patients in the 60's,
70's and even 80's receive hip resurfacing
overseas. It is an excellent option for active
people over 65 years of age.
|
| Commenter: |
mcnulty, karen
|
| Title: |
none |
| Organization: |
none |
| Date: |
9/19/2008 1:20:00 AM |
| Comment: |
|
Hip Resurfacing
[PHI Redacted] it is a bone conserving surgery.
An analogy would be if you had a hang nail, would you
amputate your finger ...no of course not ....then if
you have no cartilage left from osteoarthritis would
you cut off the the femoral head of the femur in and
replace it with a ball and spike or would you sand
of the femur and pop it back in with a metal cap and
small spike.....i think this a no brainer....your
best bet is the body part the you were made with and
if there is a surgery and a surgeon who has the
gift to give this to you than that is truly a
miracle in medicine!!!!! [PHI Redacted] Thanks for letting me share.
Karen McNulty
RHR Conserve +
Amstutz 8/29/06 |
| Commenter: |
Hardie, Eben
|
| Date: |
9/19/2008 10:20:21 AM |
| Comment: |
[PHI Redacted] was a recipient of a birmingham hip resurfacing
in [PHI Redacted] and would strongly encourage the
Government to approve this procedure as an
alternative to a full hip replacement.
While slightly more invasive, the long term
savings to the patient and to the Government as a
result of the lower likelihood of a repeat
surgery make it a much preferred procedure for
the patient and less expensive for the
Government. Strikes me as a "win-win".
As a matter of fact, [PHI Redacted] headed this week to
play in the over 50 National Clay Court Tennis
Championships, a pretty good testimonial tot he
effectiveness of the surgery. |
| Commenter: |
Petrick, Susan
|
| Date: |
9/19/2008 12:41:57 PM |
| Comment: |
|
I want to support the discussion of Hip
Resurfacing and the Medicare coverage of Hip
Resurfacing.
[PHI Redacted]
Hip Resurfacing is a viable option for people
over 65 years of age. Hip resurfacing candidates
are not chosen by their age, but by the quality
of their bones, their activity level and their
physical condition. Many patients in the 60's,
70's and even 80's receive hip resurfacing
overseas. It is an excellent option for active
people over 65 years of age. |
| Commenter: |
Leffel, Rick
|
| Title: |
Professional Engineer |
| Date: |
9/19/2008 8:21:28 PM |
| Comment: |
Proton Therepy should not be elimnated from medicare,. This therapy is state of the art, precise and effective. We do not start treatment with the old drugs because they are cheeper. We use all the modern advancement to save lives.
| | | | |
|