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View Public Comments for Reconstructive Treatments for Facial Lipodystrophy Syndrome


 
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 Public Comments
Commenter: Quinn, Bruce
Date: 1/20/2009 8:22:19 PM
Comment:

From 2004-2008 I was the regional Part B medical
director in California. We received occasional
claims for repair or restoration of lipofacial
dystrophy and I believe on a case by case basic we
found them to be primarily within a cosm   More...



Commenter: Lewis, Ray
Title: None
Organization: None
Date: 1/27/2009 5:54:09 PM
Comment:

These treatments should be covered. If one is not living with it they cannot understand what it is like to walk around looking like a freak. The medications probably caused this condition-let the drug companies share in the cost. [PHI   More...



Commenter: Maxwell, Clifton
Date: 1/27/2009 6:20:28 PM
Comment:

Personal health has a very strong connection to
ones psyche , it is unrealistic to believe the
idea that what one experinces is bsed in labs,
when the mirror says something is terribly
wrong ! We know how depression can affect ones   More...



Commenter: Lemperle, MD, PhD, Gottfried
Title: MD, PhD
Organization: Division of Plastic Surgery, University of California, San Diego
Date: 1/27/2009 6:46:37 PM
Comment:

I am retired plastic surgeon and an expert on dermal fillers.
Before the era of injectables, facial lipodystrophy was treated
surgically with malar implants or custom made small silicone gel
prostheses. Both methods were insufficient b   More...



Commenter: Munk, Robert
Title: Research Assistant Professor
Organization: University of New Mexico School of Medicine
Date: 1/27/2009 6:47:35 PM
Comment:

I feel strongly that reconstructive treatments
for facial lipodystrophy should be covered. This
is a disfiguring condition that cannot be
hidden. It is obvious to any onlooker. It causes
emotional distress as well as physical probl   More...



Commenter: Berger MD, Daniel
Title: Medical Director; Clinical Associate Professor
Organization: Northstar Healthcare; University of IL at Chicago
Date: 1/27/2009 6:51:17 PM
Comment:

As a physician, I've observed facial
lipodystrophy to be associated with depression
and anxiety that has required long term
treatment. Additionally, patients have become
less compliant and adherant to their HIV
antiretroviral    More...



Commenter: Loftus, M.D., Richard
Title: Chief Medical Officer
Organization: Health Management Institute, Inc.
Date: 1/27/2009 8:01:19 PM
Comment:

As an HIV specialist physician treating hundreds
of people with HIV and AIDS, there is no question
that facial lipoatrophy is a devastating
disfigurement produced by a combination of
infection with HIV, genetic factors, and, most <   More...



Commenter: Stennett, James
Date: 1/27/2009 8:05:37 PM
Comment:

Gentlemen:

[PHI Redacted]

People whose appearance has been ruined by HIV will turn to anything that promises them a glimmer of hope to restore their face. [PHI Redacted]. HIV is a large eno   More...



Commenter: Taylor, Jeff
Title: Co-chair
Organization: AIDS Treatment Activists Coalition Drug Development Committee
Date: 1/27/2009 11:24:25 PM
Comment:

It is crucial that reimbursement be provided for
facial reconstruction. Patients suffering from
facial wasting lose motivation to comply with
therapy putting them at risk for resistance and
vastly more expensive treatment options.    More...



Commenter: Chaille, David
Title: Facilitator, Peer Advocate
Organization: Pozabilities
Date: 1/28/2009 2:19:48 AM
Comment:

I have had several friends with facial lipodystrophy due to
HIV/AIDS. Treatment for this condition should not be considered
cosmetic. Lipodystophy is disfiguring to the point that the patient
experiences extreme emotional withdrawal an   More...



Commenter: Wilder, Bruce
Date: 1/28/2009 12:20:07 PM
Comment:

I am pleased that CMS has opened a benefit
category NCD for AIDS-related facial
lipodystrophy, and am grateful for the opportunity
to provide comments. It is important to remember
that AIDS-related lipodystrophy is a systemic
disea   More...



Commenter: Hudnutt, Randy
Date: 1/28/2009 12:55:03 PM
Comment:

All insurance companies including Medicare need to understand that lipoatrophy and lipodystrophy in HIV patients is devastating. [PHI Redacted]



Commenter: Adkins, Tom
Date: 1/28/2009 3:05:43 PM
Comment:

The treatment of lipodystrophy by various facial
fillers should be approved. There is significant
documentation in the community and medically that
certain drugs in a HAART HIV cocktail cause
lipodystrophy as well as lipoatrophy. The   More...



Commenter: johnstone, michael
Date: 1/28/2009 3:15:10 PM
Comment:

[PHI Redacted] It is absolutely clear that the disfiguring effects of facial wasting on on individuals already struggling with health complications and societal pressures, contributes to remarkably poor self esteem. Depressio   More...



Commenter: Tietz, Daniel
Title: Executive Director
Organization: AIDS Community Research Initiative of America
Date: 1/28/2009 4:42:38 PM
Comment:

I very much support Medicare coverage for
reconstructive treatment of facial lipodystrophy
syndrome. This is a medication-induced side
effect of HIV anti-retroviral treatment that can
have a devastating impact on the appearance an   More...



Commenter: Slotten, M.D., Ross
Organization: Klein and Slotten Medical Associates
Date: 1/28/2009 5:42:16 PM
Comment:

As a physician caring for patients with HIV/AIDS since 1984, I
have an interest in this issue. Facial lipodystrophy syndrome is
not a cosmetic problem. It is a medical problem the
unfortunate consequence of certain anti-retroviral age   More...



Commenter: Hooven, David
Date: 1/29/2009 1:09:14 AM
Comment:

While I know how grateful one is to be alive and be reasonably healthy, having facial wasting can be the unfortunate, result of the bittersweet success of many HIV drugs all of which have side effects.

Sometimes side-effects subside or   More...



Commenter: Flowers, Patrick
Date: 1/29/2009 5:40:07 AM
Comment:

Absolutely medicare and medicaid should pay for
this, this isn't a cosmetic issue, it's a life
altering,self esteem and relevance issue. Also
Physical appearance means a lot in our society,
this has to do with quality of life.   More...



Commenter: hewitt, terrence
Date: 1/29/2009 7:21:18 AM
Comment:

Yes. It effects the life of people with facial lipodystrophy. so there
should be some sort of coverage.



Commenter: Sherlock, J Nathan
Title: Physician
Date: 1/29/2009 9:03:05 AM
Comment:

Should not be considered cosmetic. The psycological harm done to the patient
experiencing the condition greatly affects their ability to function in daily activities because
they are acutely aware that their face tells the world that   More...



Commenter: Frampton, Larry
Date: 1/29/2009 10:25:15 AM
Comment:

[PHI Redacted] I have seen how de-moralizing Lipodystrophy can be. I strongly urge Medicare to start coverering these treatments. Lipodystophy leads to depression and in some cases suicide in Hiv/Aids patients and the feeling   More...



Commenter: Reina, Christopher
Date: 1/29/2009 12:14:33 PM
Comment:

I would urge you to support the inclusion of reconstructive treatments for HIV-related facial lipoatrophy with one caveat; physicians who administer these injections MUST be adequately trained. [PHI Redacted] From what I und   More...



Commenter: Boone, Jeff
Date: 1/29/2009 12:29:52 PM
Comment:

Reconstructive treatment for Facial Lipodystrophy Syndrome is not about cosmetics or vanity. Walking around in life with a sunken skeletal face covered only by a thin layer of skin hinders not only ones self esteem, but also ones ability to da   More...



Commenter: Rosenzweig, John
Date: 1/29/2009 1:08:46 PM
Comment:

Reconstructive treatments for facial lipoatrophy syndrome should be considered reconstructive in nature and consequently covered by Medicare. Although Medicare reasonably excludes coverage for cosmetic procedures, this exclusion is deemed not    More...



Commenter: Folkman, Michael
Date: 1/29/2009 1:53:02 PM
Comment:

[PHI Redacted] has been diagnosed with HIV Aids since the late 1980s. He has Lipodystrophy Syndrome and has benefited from treatment. Prior to treatment he was extremely self conscience and now does not exhibit the visual symp   More...



Commenter: Stevenson, Gary
Date: 1/29/2009 2:27:04 PM
Comment:

Please consider changing the policy to require
Medicare to pay for facial lipodistrophy
injections. This is a very common awful problem
and causes much distress and discomfort to many
many HIV patients. Common dignity i   More...



Commenter: B, Tom
Date: 1/29/2009 4:12:55 PM
Comment:

Reconstructive treatment for facial lipodystrophy would have a
tremendous beneficial effect on the self image of people with facial
wasting, thus encouraging them to seek employment and be less
prone to depression. If women can have br   More...



Commenter: Pierone Jr. M.D., Gerald
Title: Executive Director
Organization: AIDS Research & Treatment Center of the Treasure Coast
Date: 1/29/2009 5:49:40 PM
Comment:

I am an infectious disease physician specializing
in the treatment of HIV infection. For the last
four years, I have been treating patients with
HIV related facial lipoatrophy with facial
fillers and have witnessed first-hand the    More...



Commenter: King, David
Date: 1/29/2009 6:27:34 PM
Comment:

It's obvious from various studies that facial
lipodystrophy is a side effect of various HIV
medications and is in no way superficial or
narcissistic cosmetic surgery. It can be
horribly disfiguring and can be the cause of
sig   More...



Commenter: Krieter, John
Date: 1/29/2009 7:18:01 PM
Comment:

[PHI Redacted] It is extremely disfiguring and it negatively impacts quality of life. [PHI Redacted] it's an obvious sign of disease and its progression. [PHI Redacted] It makes compliance of    More...



Commenter: ROBBINS, MD, FACP, AAHIVS, WILLLIAM
Title: PRESIDENT
Organization: IDOCF
Date: 1/29/2009 7:55:16 PM
Comment:

As I Am Board-Certified in Internal Medicine,
Infectious Disease, and a specialist in the care
of HIV From the American Academy of HIV Medicine
approximately 1200 patients with HIV disease.
Lipodystrophy of the face, neck, and upper ba   More...



Commenter: Kramme, Patrick
Organization: AIDS Treatment Activist Coalition
Date: 1/29/2009 9:32:35 PM
Comment:

Reconstructive treatment for facial lipodystrophy syndrome as well as excessive dorsocervical fat accumulation (bufflo hump)should be covered by Medicare. These treatment are not "merely cosmetic," rather they alleviate conditions that contri   More...



Commenter: CATHCART, RONALD
Title: Staff Physician
Organization: Comprehensive Health Care
Date: 1/30/2009 8:40:57 AM
Comment:

Lipodystrophy is a term that includes 2
conditions, one - lipoatrophy - caused by
medication to treat the human immunodeficency
virus infection (HIV), the other -
lipohypertrophy - a result of a "return to
health", caused by no   More...



Commenter: Berry, Jeff
Title: Director of Publications
Organization: Test Positive Aware Network
Date: 1/30/2009 9:26:31 AM
Comment:

[PHI Redacted] I am editor of a national HIV publication, Postively Aware, and in my line of work I recieve countless letters and emails from individuals all over the world who suffer from the same condition, many of them unab   More...



Commenter: Hakanen, Dennis
Title: volunteer board president
Organization: Southwestern Pennsylvania AIDS PLanning Coalition
Date: 1/30/2009 9:55:07 AM
Comment:

Persons living with HIV or AIDS are dealing
daily with medicatons that, although prolonging
their lives, have marked and often extreme side
effects among which is facial lipodystrophy
syndrome. The appearance of facial
lipodys   More...



Commenter: Candelaria, Rey
Title: Past president
Organization: AIDS Treatment Activist Coalition
Date: 1/30/2009 11:07:20 AM
Comment:

These treatments for facial lipodystrophy are not cosmetic but
reconstructive in nature. No different than if a cancer patient
needed reconstructive surgery after removal of a cancerous tissue.
We should not have to continue to have    More...



Commenter: Saray, Russell
Date: 1/30/2009 1:01:14 PM
Comment:

Reconstructive Treatments absolutely must be covered by insurers
and Medicaid/Medicare. FAcial Lipodystrophy Syndrome is a debilitating side effect of HIV/AIDS. Would you deny
reconstructive surgery to women who is living with the afterm   More...



Commenter: Orgain, Peter
Title: RN MSN CNL
Date: 1/30/2009 1:26:41 PM
Comment:

[PHI Redacted] I am a strong advocate for US citizens to have similar coverage. Correcting facial deformity and wasting is not merely a cosmetic treatment, since it impacts how an individual is perceived by others as well as i   More...



Commenter: Clark, Gary
Title: Pharmacist
Organization: Medicine Shoppe
Date: 1/30/2009 9:04:55 PM
Comment:

I believe it is important for Medicare to cover the expense of the treatment of facial lipoatropy caused by the antivirals that we need to take to control HIV. [PHI Redacted] Now the cost of the treatment is much higher and ai   More...



Commenter: Sessa, Gerard
Date: 1/31/2009 8:49:44 AM
Comment:

People who need facial fillers due to lipodystrophy have endured a terrible stigma for a very long time now. In this day and age we should be very inlightened about the ill effects of previous treatment and not turn our back on those who can'   More...



Commenter: Beard, James
Title: Retired
Date: 1/31/2009 12:03:23 PM
Comment:

It is not enough to treat just part of any
illness. Seems to me that those "decision
makers" would not have to be prodded to do the
right thing and treat all aspects of an illness.
The research supports that the Lipodystrophy    More...



Commenter: Hare, Brad
Date: 1/31/2009 12:04:24 PM
Comment:

As a physician who has treated hundreds of HIV-
infected persons, it is clear that facial
lipoatrophy is a medical condition that arises
from a combination of HIV infection, HIV
treatment and host factors. It is not a cosmetic
   More...



Commenter: Wellborn, Susan
Title: Nurse Practitioner
Organization: Orange County Center for Special Immunology
Date: 1/31/2009 12:50:30 PM
Comment:

I have treated HIV+ patients for 12 years and
have seen the physical and emotional devastation
caused by lipodystrophy. Patient's wanting to
return to work but are unable to because of the
physical changes that cause physical    More...



Commenter: spence, tim
Title: High School Teacher
Organization: Jefferson Union School District
Date: 1/31/2009 6:07:17 PM
Comment:

[PHI Redacted]

i do think it should be covered. lipodistrophy is a very disturbing thing to happen to one's body. [PHI Redacted]

Tim Spence



Commenter: BUTLER, TANK
Title: FACIAL LIPO
Organization: N/A
Date: 2/1/2009 11:07:33 AM
Comment:

IT SHOULD BE COVERED BY MEDICARE BECAUSE OF THE
DEPRESSION,STRESS,THOUGHTS OF SUICIDE,PEOPLE WHO
STOP TAKING THERE MEDS AND PEOPLE WHO DONT WANT
TO START MEDS BECAUSE OF THOSE SIDE EFFECTS PLUS
MANY PEOPLE CANNOT AFFORD TO PAY FOR    More...



Commenter: Mest, MD, Douglas
Title: Clinical Director
Organization: Blue Pacific Medical Group
Date: 2/1/2009 2:14:23 PM
Comment:

I have been treating patients for HIV-Associated Facial
Lipodystrophy syndrome since 2001. I was the principal
investigator of 1 of 2 US trials whose data was used in the
approval process of the first FDA approved treatment for this    More...



Commenter: Parks, Dale
Date: 2/1/2009 5:11:25 PM
Comment:

Dear Medicare Admin,

[PHI Redacted] I am writing to first thank you for all you do and have done for my medical coverage. Without YOU I would be in the streets for sure. My love of country, retiring from the Departme   More...



Commenter: Singer, Shelley
Title: HIV Peer Support and Advocacy
Organization: ThreePozGals
Date: 2/1/2009 8:32:14 PM
Comment:

[PHI Redacted] It was necessary and should have been covered as reconstruction. Considering how many people forego ARV treatment because of such side effects, thus endangering their very lives, it should be correctly covered for p   More...



Commenter: Sidoti, Dennis
Date: 2/2/2009 4:06:38 AM
Comment:

I do feel that the lipodystrophy syndrome is due
to Medication and should be covered by medicare
and i also would like to point out the the Bufflo
hump ( back fat) is also due to long term use of
medication and should be covered   More...



Commenter: DeJesus, Edwin
Date: 2/2/2009 12:20:18 PM
Comment:

Facial lipoatrophy is withput doubt a
devastating medication-induced side effect that
affect the psychological and physical (clinical)
well-been of our patients, affecting adherence
and detouring patient of getting the needed
t   More...



Commenter: Seitz, Jason
Date: 2/3/2009 1:53:20 PM
Comment:

I believe that the costs should be covered because
facial lipodystrophy causes discrimination and low
self esteem which lead to depression. I have
known many people who have suffered from
degradation and have even seen anecdotal
di   More...



Commenter: DAversa, Jean
Date: 2/3/2009 2:08:43 PM
Comment:

As a nurse working in a Ryan White funded HIV
clinic, I have seen many patients who are living
longer and healthier lives with HAART. We are
all trying hard to diminish the stigma related
to this disease. However, many patients suf   More...



Commenter: Kerley, David
Date: 2/4/2009 9:09:33 AM
Comment:

Please see
www1.va.gov/vhapublications/ViewPublication.asp?pub_ID=1640

Department of Veterans Affairs VHA DIRECTIVE 2008-003

Veterans Health Administration


January 22, 2008

TREATMENT OF ANTIRETROVIRAL-INDUCED FAC   More...



Commenter: Kloet, Ingrid
Title: Consultant, HIV PRevention Education/Case Manager
Date: 2/4/2009 9:10:22 AM
Comment:

Yes this needs to be provided and covered in
every insurance plan PLWHA's having.

The treatment for facial wasting is very
important for every individual, mentally and from
what I know out of experience with friends having
   More...



Commenter: Chicago, Gregory
Date: 2/4/2009 9:30:27 AM
Comment:

I have seen the benifits of these injectables first hand and know the calming effect they have. [PHI Redacted] I hope the decision is made to add this procedure so others can benefit and hopefully the insurance companies wil   More...



Commenter: DeGroot, Thad
Date: 2/4/2009 9:35:42 AM
Comment:

I believe that persons who have extreme facial fat loss should recieve some assistance from the CMS. [PHI Redacted]

Thank you for your time and all of your help.

Thad T De Groot
San Antonio, TX



Commenter: Goldberg, Steve
Title: Mr.
Date: 2/4/2009 10:18:44 AM
Comment:

[PHI Redacted] If a retired/disabled GI can't receive the medical attention promised, who can expect to be helped?

[PHI Redacted]

Speak up people. This country's military/Veterans aren't   More...



Commenter: Walsh, Brian
Date: 2/4/2009 10:40:32 AM
Comment:

Many times, I can walk into a room and know who has HIV by looking at there face. It effects those with facial wasting to withdraw from society. [PHI Redacted] passed away from cancer and not AIDS. He gradually withdrew becau   More...



Commenter: Urbanus, Doug
Date: 2/4/2009 11:06:51 AM
Comment:

A friend of mine suffered from severe lipoatrophy
of the face. I paid for half the cost of the
injection of the filler and the filler itself was
donated. Still the cost was $2800 for a condition
that was either caused by HIV or the t   More...



Commenter: Darrow, Robert
Title: Executive Director Emeritus
Organization: The Philadelphia Center
Date: 2/4/2009 11:45:18 AM
Comment:

[PHI Redacted] We humanely help foreigners with reconstructive surgeries for their severe facial deformities, shouldn't we help Americans with equally mentally-damaging effects?



Commenter: Yingling, Elizabeth
Date: 2/4/2009 12:01:52 PM
Comment:

I think this is an extremely important procedure that should be covered by Medicare. [PHI Redacted] Insurance and Medicare has no problem with covering Viagra, to boost a man's self esteem and prevent depression. [PH   More...



Commenter: Cromley, Keith
Date: 2/4/2009 12:04:28 PM
Comment:

[PHI Redacted]

Please support coverage for facial wasting for those who truly need it to keep on working and living in a world that does not always understand. [PHI Redacted]



Commenter: Cook, Scott
Title: Professor of History
Organization: Rhode Island School of Design
Date: 2/4/2009 12:28:39 PM
Comment:

I feel very strongly that this is NOT a cosmetic but a health procedure just as reconstructive breast post-cancer surgery is. [PHI Redacted] went to Canada (Toronto) in June 2006 to have bio-alcamid injections performed by Dr.   More...



Commenter: McCutcheon, Gerald
Date: 2/4/2009 1:12:44 PM
Comment:

[PHI Redacted] It is not a cosmetic procedure to help relieve this symptom of HIV. It is life-altering. It absolutely should be covered under the guidelines so it can be easily procured at the discretion of the attending physi   More...



Commenter: Solero, Richard
Title: Medical Director Infectious Diseases
Organization: Orange County Health Department CHEERS Program
Date: 2/4/2009 2:48:01 PM
Comment:

I agree that reconstructive Treatments be covered
by Medicare and Medicaid but not only for facial
lipodystrophy. We have patients with Buffalo
humps that will benefit from liposuction and
surgical removal and unfortunately because   More...



Commenter: Schurman, Michael
Date: 2/4/2009 3:50:09 PM
Comment:

Sirs: For many with HIV/AIDS, a side effect of these life- saving drugs is lipodystrophy. Being in public is difficult enough with emaciated arms and legs, but with hollowed cheeks, temples and eyes, some look like walking skeletons.    More...



Commenter: Vokoun, James
Date: 2/4/2009 3:56:30 PM
Comment:

[PHI Redacted]

What is the point of taking antiretroviral treatments at all when this insane deformity is the end result? The burden of this disfigurement is too much to bear, and far too expensive for those living o   More...



Commenter: Yue, Alan
Title: Board member and client
Organization: Life Foundation, Inc.
Date: 2/4/2009 3:59:56 PM
Comment:

Aloha awakea!

[PHI Redacted]

I hope that CMS will seriously consider allowing reimbursement for facial reconstructive treatments and procedures. These reconstructive procedures can make a positive impact to    More...



Commenter: Wehr, Bob
Date: 2/4/2009 3:59:57 PM
Comment:

Hi, I know of people that are hiv positive and
have seen their faces change dramatically for the
worse due to Lipodystropy. It seems the fat or
normalness leaves from their face and and they
start to look sickly or disfigued; the   More...



Commenter: Schwartz, Jerry
Date: 2/4/2009 4:01:46 PM
Comment:

The HIV medications are known to be the cause of Lipodystrophy Syndrome, as well as the buffalo hump.[PHI Redacted] I think Medicare and Medi-cal should take care of these problems since they are caused from medications keepin   More...



Commenter: Kytle, Rayford
Title: Writer
Date: 2/4/2009 4:27:55 PM
Comment:

Lipoatrophy is disfiguring. It causes people to
look deathly and frightening, negatively
impacting the emotional,social and professional
lives of those who have it. It is no less
disfiguring than many women feel mastectomies to <   More...



Commenter: Capogna, David
Date: 2/4/2009 4:33:41 PM
Comment:

I'm writing in response to an article in
POZ/AIDSmed.com. Living in NYC, people are more
used to seeing walking skeletons on the street.
After reading the AIDSmeds.com article, I was
brought to tears some of the comment from
smal   More...



Commenter: Broussard, Richard
Date: 2/4/2009 4:55:48 PM
Comment:

It is vitally important for Medicare to inlude
coverage for treatments of HIV-related facial
wasting. The long-term effects of this
debilitating condition takes it's ugly toll each
and every day erroding a facial wasting
su   More...



Commenter: Newby, Don
Date: 2/4/2009 5:32:49 PM
Comment:

Health care treatment should be as equal as
possible. If a woman has breast cancer and
medicare pays for reconstrutive surgery because
the woman has been disfigured by a disease.

With aids, the same logic is true. One face is    More...



Commenter: Connors, Daniel
Date: 2/4/2009 5:58:52 PM
Comment:

Reconstructive Treatment for Facial Lipodystrophy
Syndrome is medically necessary. FDA approved
treatment for AIDS causes facial disfigurement to
the degree that reconstructive surgery is required
to correct it. This is not cosmetic s   More...



Commenter: Robbins, Jerry
Title: Mr. Jerry L Robbins
Organization: Self
Date: 2/4/2009 7:03:13 PM
Comment:

There are several ways to reconstruct your face by a qualified MD.
The PMMA which is only allowed in mexico at the certain time has
remarkamble results. Even the price being Higher at first the over
all cost would be lower since Sculptr   More...



Commenter: Vaknin, Uri
Date: 2/4/2009 7:15:18 PM
Comment:

Facial Lipodystrophy is a direct result of HIV
and HIV medication. It is a medical condition
that has adverse effects on those who have it.
It makes no sense that it is not covered by
insurance. It is similar to breast cancer    More...



Commenter: Heldt, Derrick
Date: 2/4/2009 7:40:05 PM
Comment:

I am glad to hear the CMS and Medicaid are
thinking of covering this for HIV patients.
Facial wasting can be a very serious issue for
patients. Having a way that can help people feel
better about themselves just like is done for    More...



Commenter: Le Clair, Charlie
Title: Former Chair ( 2005-2006) AIDS Avocate
Organization: Miami-Dade HIV/AIDS Partnership ( planning Body )
Date: 2/4/2009 7:55:16 PM
Comment:

I believe all treatment for Aids care should be
cover by the government the sooner we get people
into care the happier and healthy they will.
People must stop using this illness as a barrier.
Take good care of yourself and get , back    More...



Commenter: Olivier, Nanell
Date: 2/4/2009 9:25:23 PM
Comment:

This reconstructive treatment should be covered
just like breast reconstructive surgery for
cancer patients.  These treatments help a patient
live a more normal life.



Commenter: Butler, Edwin
Date: 2/4/2009 10:28:02 PM
Comment:

I believe that Lipoatrophy Treatment should be covered by Medicare because without these treatments HIV positive people would feel embarrassment, and feelings of worthlessness that they would not feel if they could afford these treatments whi   More...



Commenter: Hawkins, Paul
Date: 2/4/2009 11:00:08 PM
Comment:

I support coverage for these reconstructive
treatments. I have known individuals with HIV-
related facial wasting who have been stigmatized
because others assume the facial wasting is a
result of abusing illegal drugs. Let's face   More...



Commenter: Speakman, William
Date: 2/5/2009 1:36:22 AM
Comment:

There is enough data to show a huge impact on quality of life, depression and anxiety, suicidal thoughts and poorer adherence to antiretroviral medication among people with facial wasting. [PHI Redacted] This is not cosmetic.    More...



Commenter: LEE-VILLACORTE, TIMOTHY
Date: 2/5/2009 2:36:51 AM
Comment:

Recontructive treatments for facial lipodystophy syndrone in my opinion should be cover under our governments medicare program. Lets face it, plastic surgury is very exspensive and is noted to be a proceedure that is reserved primarily for th   More...



Commenter: Vice, Bobby
Date: 2/5/2009 3:01:24 AM
Comment:

It is definitely a must have. [PHI Redacted] It helps restore your normal appearance, and helps with the stigma, and depression that is caused from the wasting. It is vital for anyone who is HIV positive and has been on HAART f   More...



Commenter: DeShazo, Theo
Date: 2/5/2009 5:01:18 AM
Comment:

The addition of coverage for Lipoatrophy will have
a positive impact on individuals with HIV.
Lipoatrophy is a devastating component of HIV; it
greatly diminishes the quality of life and self
esteem of individuals suffering with HIV. I   More...



Commenter: Beasley, Joseph
Date: 2/5/2009 6:19:14 AM
Comment:

Customer - 02/04/2009 05:22 PM
Treatment for facial wasting/butt wasting in patients with AIDS/advanced HIV disease should be covered by Medicaide/Medicare. It is crucial and certainly NOT "cosmetic". [PHI Redacted] This   More...



Commenter: Savage, Linda
Date: 2/5/2009 6:19:41 AM
Comment:

[PHI Redacted] This effect of the drugs he has to take has been one of the most mentally debilitating for him. He gets very depressed the more and more his face seems to sink in. He would do just about anything to be able to    More...



Commenter: Bybee, Steven
Date: 2/5/2009 7:40:03 AM
Comment:

Yes, it should be covered. An individuals face is the passport to how others perceive them. Depression, anxiety and even suicidal thoughts can accompany facial wasting. If it happens to me, I would want the chance to correct it.



Commenter: Seltenright, Michael
Date: 2/5/2009 7:49:50 AM
Comment:

Facial lipodystrophy for HIV positive individuals is a life changing experience. You are no longer the person you were months prior to the obvious changes and you feel the mark of Cain upon you. Your concern becomes that everyone will know jus   More...



Commenter: fuqua, chris
Date: 2/5/2009 7:57:25 AM
Comment:

I am very much in favor of having treatment for facial wasting covered by medicare/medicaid. [PHI Redacted]

[PHI Redacted] Most of the people I've known that have had to deal with wasting are moderat   More...



Commenter: seabaugh, david
Date: 2/5/2009 8:23:08 AM
Comment:

The stigma associated with the Lipodystrophy can
be devistating. Especially in small towns
where people have no idea what is going on,
you are associated with being a drug addict
because of your looks. In more HIV   More...



Commenter: Perez, Edwin
Date: 2/5/2009 8:29:17 AM
Comment:

YES! ALL THE HELP WE CAN GET REGARDING FACIAL LIOPDYSTROPHY AND THE REST OF THE BODY AFECTED BY THIS TERREBLE SIDE EFECT. I'M LOOKING FORWARD TO SEE THIS APPROVED BY THE GOVERMENT AND PRIVATE INSURANCE AT SOON AS POSIBLE.[PHI Redacted   More...



Commenter: McCowen, Albert
Date: 2/5/2009 9:11:57 AM
Comment:

[PHI Redacted] it seems imperative that these procedures be covered by Medicaid/ Medicare. The anxiety wasting of the face causes is unmeasurable. I [PHI Redacted] would like to see Medicaid follow the wishes of t   More...



Commenter: Sarrias, RN, Eliezer
Date: 2/5/2009 9:24:32 AM
Comment:

As a registered nurse, I believe the treatments
for facial wasting should be covered. Facial
wasting is often assciated not only with
depression but poor medication compliance due to
fear of body image distubances relating to this   More...



Commenter: Sanders, David
Date: 2/5/2009 10:35:34 AM
Comment:

I say all insurances should absolutely cover the costs of Facial Lipodystrophy, especially of the facial area. [PHI Redacted] experienced severe facial wasting due to anti-retroviral therapy. He finally paid to have several ro   More...



Commenter: Rider, Damon
Title: Mr.
Date: 2/5/2009 10:52:09 AM
Comment:

[PHI Redacted] Just to appear "normal" can so easily be taken for granted by those that are unaffected by this grotesque side affect of AIDS. I hope my voice helps make a difference and that in the near future afficted people   More...



Commenter: Woman in Texas, Anonymous
Date: 2/5/2009 12:28:34 PM
Comment:

I personally have spent more than 20 thousand
dollars on facial injection treatments. These
dollars could have been better spent supporting
my family and our economy. The same products
that were injected were at a much lower cost    More...



Commenter: Price, Rebecca
Date: 2/5/2009 12:53:13 PM
Comment:

[PHI Redacted] NOT for cosmetic reasons AT ALL. This is about SELF-ESTEEM, this is about not looking like a skeleton with skin stretched over your bones. Because of the meds, many people are affected, feeling OK about how one    More...



Commenter: Waldman, Lisa
Date: 2/5/2009 1:33:53 PM
Comment:

I am a mental health professional who has worked with people experiencing facial and other lipodystrophy and I completely support reconstructive treatment coverage from Medicaid and Medicare. [PHI Redacted] The individuals liv   More...



Commenter: Williams, Doug
Title: Case manager
Organization: City of Long Beach Health Dept.
Date: 2/5/2009 1:57:36 PM
Comment:

[PHI Redacted]

I am an HIV case manager in a City run clinic and know of clients who have stopped medications and actually died due to the stress and shame that this condition causes

I cannot say enough in suppo   More...



Commenter: Adams, John
Date: 2/5/2009 2:28:30 PM
Comment:

I strongly support coverage for reconstructive treatments for facial lipodystrophy and urge the government to institute this policy. [PHI Redacted]

[PHI Redacted] has been affected by lipodystrophy, but is    More...


Commenter: Vergel, Nelson
Title: Director
Organization: Program for Wellness Restoration- Sponsors of facialwasting.org
Date: 2/5/2009 3:49:50 PM
Comment:

I am [PHI Redacted] the founder of FacialWasting.org and one of the founding members of the AIDS Treatment Activists Coalition (ATAC). I moderate the largest HIV health online group (pozhealth at yahoogroups.com), where I get    More...



Commenter: Pope, Jeffrey
Title: Advocate
Date: 2/5/2009 3:52:34 PM
Comment:

[PHI Redacted]

When you look like a living corpse, it is very difficult to continue taking the very medications which cause the condition. Living with this condition becomes very much a nightmarish catch- 22 in which y   More...



Commenter: Smetanka, Stella
Title: Clinical Professor
Organization: Health Law Clinic, University of Pittsburgh School of Law
Date: 2/5/2009 4:41:06 PM
Comment:

CMS should approve a new benefit category for
AIDS related lipodystrophy for three reasons:
1. LDS has profound physical, psychological and
socially stigmatizing effects;
2. No safe alternative treatments exist to
remedy LDS; a   More...



Commenter: Markle, Charles
Date: 2/5/2009 6:20:28 PM
Comment:

[PHI Redacted] It''s very difficult to get by on a fixed income and to pay off these charges for the facial filler. I feel that this is a direct side effect from a medication/illness and that it should be covered. It affect   More...



Commenter: Sullivan, Donnie
Date: 2/5/2009 7:05:56 PM
Comment:

[PHI Redacted] That said, what IS the proper way to deal with facial lipodystrophy? If medicaid, medicare, or other healthcare suppliers for the non-insured are not going to fund reconstructive treatments for facial lipodys   More...



Commenter: Teixeira, DrPH, Paul
Title: Research Fellow
Organization: Columbia University Medical Center
Date: 2/5/2009 9:58:14 PM
Comment:

I believe that lipoatrophy should be considered an
HIV-related condition and CMS should cover
reconstructive procedures for facial wasting.
Providing medications to keep people healthy while
denying them access to relatively inexpensiv   More...



Commenter: Teixeira, DrPH, Paul
Date: 2/5/2009 10:17:42 PM
Comment:

I want to add on more thought- CMS redacts PHI
from these comments due to the HIPAA privacy rule.
But people living with facial wasting have no such
ability to edit the information conveyed by their
facial disfigurement.



Commenter: Benic, Jere
Date: 2/6/2009 12:24:43 PM
Comment:

[PHI Redacted] Allowing medicaid to pay for treatment for this condition will greatly improve the lives of those afflicted with this medical condition. I can unequivocally state that treatment for lipoatrophy/lipodystrophy    More...



Commenter: Cyrille, Marcoli
Date: 2/6/2009 3:20:29 PM
Comment:

I'm a physician and I have interacted with HIV
positive individuals both professionally and
personally. The social stigma and the emotional
toll and burden secondary to facial lipodystrophy
could never be overstated. The anxiety,    More...



Commenter: Snow, Ross
Date: 2/6/2009 3:53:55 PM
Comment:

[PHI Redacted] Facial wasting identifies you as having HIV and exacerbates the social stigma that the disease has with many in our society. It has been unclear whether the facial wasting is due to the disease or some of the dr   More...



Commenter: Nakken, Ron
Date: 2/6/2009 4:12:18 PM
Comment:

I think Dr. Cathcart states it very well and I
repeat his comments here adding that the effects
of Lipoatrophy are disfiguring and contribute
greatly to intensifying psychological conditions
such as depression, anxiety, social phobias    More...



Commenter: Craig, W.
Date: 2/7/2009 12:15:48 AM
Comment:

It is very important that the government provide
financial assistance for individuals who
physiologically as well as psychologically suffer
as a result of lipoatrophy due to certain
medications used for the treatment of HIV/AIDS.    More...



Commenter: Negado, Caesar
Date: 2/7/2009 1:40:03 AM
Comment:

Two [PHI Redacted] are in great need of reconstructive treatment for FLSyndrome. The process is not cosmetic, as it is replacing what was taken away, and helps the patients self esteem, psychology, and mental ability to face th   More...



Commenter: Luster, Kenn
Title: client
Organization: ARRT
Date: 2/7/2009 8:31:42 AM
Comment:

A lot of the times you can tell if someone has
advanced HIV or AIDS just because of looking at
their face most people do not have this
situation. I don't believe it is cosmetic when
it distorts a persons facial features and makes   More...



Commenter: Fortman, John
Date: 2/7/2009 10:40:14 AM
Comment:

Please consider coverage for lipoatrophy for individuals with Aids. Aids is stygmatizing and lipoatrophy is a dead give away to others that a person has Aids.

People just want their faces back. AIDS has gouged out their cheeks and it   More...



Commenter: DORRIETY, Tim
Date: 2/7/2009 11:46:40 AM
Comment:

[PHI Redacted] I strongly feel that this should be covered. This is not a cosmetic procedure but a procedure to restore what the disease and the harsh treatment regimens have taken away.

This problem is a very seriou   More...



Commenter: Rowe, Gregory
Date: 2/7/2009 11:46:52 AM
Comment:

As a psychotherapist working in San Francisco I
have the opportunity to see the impact of "facial
filling" first hand. I do work with a support
network of about 400 persons with HIV. Because one
of our larger local HMO's has chosen to   More...



Commenter: Kotler, Donald
Date: 2/7/2009 3:56:23 PM
Comment:

The changes of the facial lipodystrophy syndrome
are, in large part, a side effect of medications
used to suppress HIV. At the time when most
cases developed, their occurence was unavoidable,
as non-toxic medications were not avai   More...



Commenter: Stevenson, Erin
Title: Retired
Date: 2/7/2009 4:39:17 PM
Comment:

I certainly support reconstructive Botox for use
the in relieving the pain and emotional stress of
facial lipodystropy. [PHI Redacted]

 



Commenter: Hill, Dee
Title: Mr.
Date: 2/7/2009 11:40:42 PM
Comment:

Please! consider covering treatment for facial
lipo. There are numerous reasons as to why this
should be done, which none of them have to do
with vanity or cosmetic reasons. One's quality of
life improves, ex. going back to work,    More...



Commenter: Dixon, Marshall
Date: 2/8/2009 12:20:31 AM
Comment:

This procedue is a must for persons experiencing
the lipodystrophy syndrome. Like other health
issues, the benefits of this procedure out weigh
the cost. Much like we know keeping a person
under a care of a doctor to remain healthy   More...



Commenter: Ruben, Ruben
Date: 2/8/2009 12:53:34 AM
Comment:

Lipodystrophy is not only a physical problem, it
affects the psyche of its victims. This can
translate into psychological issues down the road,
hence resulting in a bigger expense.

Think before you act by denying this benefit whic   More...



Commenter: Davis, Michael
Date: 2/8/2009 1:18:45 AM
Comment:

The importance of treating facial fat loss as a side effect of antiretroviral drugs to control viral replication among the HIV+ population cannot be overstated.

[PHI Redacted] While the metabolic abnormalities asso   More...



Commenter: Robbins, Jerry
Organization: none
Date: 2/8/2009 5:24:47 AM
Comment:

I believe that each person deserves to look as normal as they can. The present system with sculptra works for a year at best. In America you are only allowed to use sculptra as a filler for places on your face and body that need reconstruction    More...



Commenter: Lupole, Tricia
Title: National Coordinator
Organization: Hepatitis C Movement for Awareness
Date: 2/8/2009 3:56:58 PM
Comment:

I have personally and professionally witnessed
the devastating effects that lipodystrophy
syndrome cause patients. Our society should not
allow the consequences of an HIV related disease
to cause deformity when it can be prevented.   More...



Commenter: Egan, Francis
Title: Retired
Date: 2/8/2009 10:42:20 PM
Comment:

At my HMO there is a 6 month waitlist for Lipodystrophy treatment
for patients who cannot afford the normal charge. The wait is
worth it and patient is scheduled in on Plastic Surgeon "slow " days
and just the usual co-pay is charged.   More...



Commenter: Hinman, Bryan
Date: 2/8/2009 11:00:50 PM
Comment:

[PHI Redacted] Part of our well being is how we see ourselves not just vainity but for self- esteem. When one can have a touch of surgery to help improve his/her look means a lot and can help with the healing process. It is a   More...



Commenter: Murphy, Mark
Title: Legal Director
Organization: Disability Rights Network of Pennsylvania
Date: 2/9/2009 7:59:54 AM
Comment:

I am submitting this comment on behalf of the
Disability Rights Network of Pennsylvania (DRN).
DRN is a statewide, non-profit corporation
designated as the federally-mandated organization
in Pennsylvania to advance and protect the civ   More...



Commenter: Manders, MD, Ernest K.
Title: Professor of Surgery
Organization: The University of Pittsburgh
Date: 2/9/2009 8:57:39 AM
Comment:

Dear Sir/Madame: Thank you for the chance to
urge coverage for the treatment of HIV
associated lipodystrophy. This condition is
documented in our medical literature to be the
cause of depression and great unhappiness. Any
di   More...



Commenter: Howard, Ken
Date: 2/9/2009 11:09:52 AM
Comment:

PLEASE include coverage for the reconstructive treatment of facial lipoatrophy/lipodystrophy in the treatment of HIV disease.

I am a licensed psychotherapist in California, [PHI Redacted]. I specialize in workin   More...



Commenter: Horn, Bruce
Date: 2/9/2009 12:17:45 PM
Comment:

Thank your for allowing this discussion. Yes,
Facial Reconstruction should be allowed when
caused by Lipodystrophy Syndrome.

Just as important, Liposuction needs to be
allowed for Lipodystrophy Syndrome Fat Deposits.
Usual   More...



Commenter: Vergis, Emanuel
Title: Assistant Professor of Medicine
Organization: University of Pittsburgh
Date: 2/9/2009 12:27:38 PM
Comment:

I strongly believe that reconstructive
treatments for facial lipodystrophy should be
covered by insurance. I see many individuals
with this syndrome in my HIV practice and know
quite well the psychological distress that they
e   More...



Commenter: Foote, Greg
Title: President
Organization: United Funding Mortgage Corp.
Date: 2/9/2009 2:57:50 PM
Comment:

I feel that their should definitely be medicare
coverage for those with AIDS-related facial
wasting pursuing procedures to reduce or
eliminate facial wasting.

The rationale is that many people that are
afflicted with this    More...



Commenter: Andrews, John
Date: 2/9/2009 3:31:07 PM
Comment:

Please cover the cost of this treatment for people with HIV disease and other lipo- atrophy/wasting conditions. [PHI Redacted]

Treatments for other disease-related conditions are covered - this should be too.

<   More...


Commenter: Kowal, Paul
Title: President
Organization: Kowal & Associates, Inc.
Date: 2/9/2009 5:20:20 PM
Comment:

[PHI Redacted]

I believe that making these treatments available to those who can not afford them on their own will help people to make progress in the fight against their HIV condition.



Commenter: Carpenter, Michael
Date: 2/9/2009 6:55:07 PM
Comment:

With an HIV/AIDS diagnosis over a number of years,
lipodystrophy can be severe and cause disfiguring
facial fat loss. The condition can provoke people
to stare in public and children point and ask
their mothers to explain. Further, it    More...



Commenter: Hansen, Gregory
Organization: Advocate
Date: 2/9/2009 7:43:43 PM
Comment:

To those in charge of decision-making, especially
the ones who are not closely affected by Facial
Lipodystrophy Syndrome,
Please consider the fact that this horrific
disease is not an enhancement to one's
appearance. It is, at   More...



Commenter: Wickersham, Ron
Date: 2/9/2009 8:47:17 PM
Comment:

i support the coverage of treatment in this document.

1) the proximate cause of the Syndrome is that the
patent followed a doctor's recommendation for
treatment.

2) this was an unknown side effect of one or more
drugs that    More...



Commenter: Bongiorno, Anthony
Title: Executive Director & Founder
Organization: The Friends of AIDS Foundation
Date: 2/9/2009 9:44:46 PM
Comment:

I feel strongly that these treatments should be
covered. I have worked with hundreds of HIV
positive individuals in support groups over the
last three years, many of whom have had to deal
with facial lipodystrophy. Although this is   More...



Commenter: Garbera, Alexander
Date: 2/9/2009 9:46:31 PM
Comment:

The fact that there is an FDA approved treatment
for HIV facial wasting, but the procedures to
administer it are not covered my Medicare is
unconscionable. There is no doubt in my mind
that certain anti HIV/AIDS medications cause   More...



Commenter: Ahumada, Ana
Date: 2/9/2009 10:03:35 PM
Comment:

I think that should be covered,and not
considered cometic surgery because of treatment
outcomes.They are already fighting to have a
life, and this condition also adds to serious
depression, and anxiety for people living with
th   More...



Commenter: Fitting, Bruce
Date: 2/10/2009 1:55:54 AM
Comment:

To whom it may concern:

[PHI Redacted]

I know of several people, however, who gave up on their life-saving medications because of the unnatural changes in their appearance. They are all gone now. I also know   More...



Commenter: Mills, Russell
Date: 2/10/2009 11:17:41 AM
Comment:

Facial lipodystrophy has a psychological impact even greater than
mastectomy does, since the face is typically seen far more than the
breasts are. Is breast reconstruction covered by Medicare? Yes.
Facial reconstruction should be cover   More...



Commenter: Tredway, Steven
Date: 2/10/2009 11:43:00 AM
Comment:

I believe Medicare/Medicaid SHOULD pay for the
treatments for facial lipodystrophy in patients
living with HIV/AIDS.

When a person living with HIV maintains "good"
health, has bloodwork numbers that are excellent,
yet is reduced   More...



Commenter: Phelps-Munson, Marcus
Date: 2/10/2009 12:47:08 PM
Comment:

I believe the title that you chose to give this issue answers the very
question at hand, ÒReconstructive Treatments for Facial
Lipodystrophy SyndromeÓ. It is reconstruction of something taken
away by disease, not a cosmetic surgery for   More...



Commenter: Austin, Allan
Date: 2/10/2009 12:50:20 PM
Comment:

Adding approval of effective treatment procedures to Medicare & insurance coverage protocol would be extreamly benificial for the physical & emotional well being of people living with HIV. Treatments available now, are too expensive fo   More...



Commenter: grange, donald (donie)
Date: 2/10/2009 1:45:27 PM
Comment:

if you look good you feel better



Commenter: Bryer, Lawrence
Date: 2/10/2009 2:03:42 PM
Comment:

As a psychiatrist, I have seen many HIV patients
whose facial wasting was severe, disfiguring, and
a cause of stigma, depression, agoraphobia and
other anxiety disorders. To call such cases
cosmetic rather than reconstructive is t   More...



Commenter: Swanson, Alan
Date: 2/10/2009 2:41:14 PM
Comment:

To Whom it may concern:
Please help people with Hiv and facial wasting get help to pay for treatment of facial wasting. [PHI Redacted] A person may have hiv but facial wasting makes their lives even that more difficult    More...



Commenter: Jean, M
Title: Humanitarian-Board of Director
Organization: Doctors of the Globe/Medecins du G;lobe
Date: 2/10/2009 2:56:47 PM
Comment:

As a health care professional I have too many
times witnessed the devastating effect that
lipodystrophy can have on an individual with a
long term condition such as AIDS. Such effects
are often a result of the progression of the    More...



Commenter: goldman, bonnie
Title: Editorial Director
Organization: TheBody.com
Date: 2/10/2009 4:52:25 PM
Comment:

Just like women can get reconstructive surgery
paid for by their public or private insurance
providers, so too should HIV-infected people
receive coverage for payment to reconstruct their
face or body after they take HIV medication   More...



Commenter: cassin, gregg
Title: CHAIR
Organization: AIDS, MEDICINE AND MIRACLES
Date: 2/10/2009 6:39:54 PM
Comment:

Dear CMS ,

Please let me introduce myself. My name is Gregg Cassin [PHI Redacted] I am the chairperson of the national AIDS service organization AIDS, Medicine and Miracles. (Please see the below websites for more   More...



Commenter: Taylor, Brian
Title: RN
Date: 2/10/2009 6:58:52 PM
Comment:

I have been a nurse (RN) in an HIV clinic for 18
years. I have seen alot. Most importantly I
witnessed a dramatic drop in the death rate among
my patients when better medications were
introduced in 1995. Along with better medicati   More...



Commenter: Bucher MD, Gary
Title: Medical Director
Organization: Radius Health
Date: 2/11/2009 6:30:17 AM
Comment:

I am a primary care physician that has been
active in the care of HIV patients since the mid-
80's and have seen many changes in the treatment
of HIV disease. Unfortunately, the use of HAART
or just the disease process itself casus   More...



Commenter: Emmons, John
Title: RN
Date: 2/11/2009 11:35:50 AM
Comment:

The effects of lipoatrophy are frequently high
impact on patient's lives. Sequelae include major
depression, altered self-image and extremely
negative reactions from the public and co-workers
as these patients look gravely ill. Curr   More...



Commenter: Illeman, FNP, Mark
Title: Family Nurse Practitioner
Organization: Feldman Medical Group
Date: 2/11/2009 12:34:02 PM
Comment:

As a Nurse Practitioner trained in Dermatology and
HIV Medicine who has performed over 450 treatments
of facial fillers ie) Sculptra, I can say without
question that the psychological benefit of these
treatments has changed my patients   More...



Commenter: Alexander, Dorian-Gray
Title: Citizen Advocate
Date: 2/11/2009 12:54:22 PM
Comment:

Affordable treatment to repair damage from facial lipoatrophy is
greatly needed. I urge careful consideration and support
reimbursement for reconstructive treatment.

Several individuals I know suffer with feelings of disfigurement,   More...



Commenter: Finnigan, Dennis
Date: 2/11/2009 3:47:29 PM
Comment:

[PHI Redacted] It's depressing and sometimes it's hard to make oneself be seen in public with such disfigurement. Reconstructive therapy of the face would ease the burden tremendously and would help people stricken with HIV   More...



Commenter: LaCaze, Dennis
Date: 2/11/2009 9:33:55 PM
Comment:

I believe that the treatment of facial lipodystrophy due to HIV/AIDS should be a covered medical expense under Medicare guidelines. Facial lipodystropy is a reality for many individuals with HIV/AIDS. It can (and does) lead to discrimination    More...



Commenter: Bennette, Sherri
Title: N/A
Organization: N/A
Date: 2/12/2009 11:05:56 AM
Comment:

For once successful, divorced, middle aged women with HIV/AIDS it is hard enough to make friends, let alone meet a person of the opposite sex to date. The odds of ever getting married again are highly unlikely. Add to that the fact that many    More...



Commenter: Hardy, Helene
Title: HIV Pharmacotherapy Program, Director
Organization: Boston Medical Center
Date: 2/12/2009 11:10:46 AM
Comment:

As a clinical pharmacist working with HIV-
infected patients on a daily basis I am often
involved in the management of HIV medication
related side-effects. Unfortunately, Facial
lipodystrophy is a side effect that most
clinicia   More...



Commenter: Owens, Craig
Title: Director
Organization: CFI/Wesgateresorts.com
Date: 2/12/2009 1:38:34 PM
Comment:

YES! WE SHOULD HELP! WE HELP SO MANY OTHERS - WHY
WOULD WE NOT HELP THIS TOO? OUr money needs to be
spend on US here, at home, before spending it all
on other countries.



Commenter: Giga, Noreen
Title: Bilingual Outreach Educator
Organization: Gay & Lesbian Advocates & Defenders
Date: 2/12/2009 1:56:46 PM
Comment:

People living with HIV continue to face privacy
violations, stigma and discrimination in their day
to day lives. Our AIDS Law Project receives calls
from people with HIV-related legal concerns, and
we’re aware that people want to prote   More...



Commenter: Paris, Lance
Date: 2/12/2009 2:19:26 PM
Comment:

I would like to thank the Centers for Medicare and Medicaid Services (CMS) for opening the National Coverage Determination (NCD) process to the question of whether or not Medicare will cover reconstructive treatment of facial lipodystrophy    More...



Commenter: foster, ron
Date: 2/12/2009 3:40:32 PM
Comment:

I am writing on behalf of [PHI Redacted].He has been HIV positive for about 15 years or so and has been through more than most people go through in a lifetime.[PHI Redacted] I can see how this affects him in al   More...



Commenter: Gadaire, Ronald
Organization: former Registered Nurse
Date: 2/12/2009 5:27:54 PM
Comment:

[PHI Redacted] These drugs and appointments are covered, why not treat the cause and not the secondary symptoms? Studies have demonstrated increase self esteem, energy and self worth after treatment with facial fillers. Commo   More...



Commenter: Drummond, Inez
Date: 2/12/2009 5:41:17 PM
Comment:

In today's society where other human being are so
judge mental of other people, why wound you want
to deny this procedure for facial lipodystrophy
treatments and reconstructive surgery!... I
strongly feel this treatment and surgery is   More...



Commenter: McIntyre, Joseph
Date: 2/12/2009 7:01:47 PM
Comment:

I feel the treatments for LDS should be covered
by Medicare as well as all commercial/managed
care insurances in this country. This
consideration should not be based on the
assumption that these corrective procedures
are "cosme   More...



Commenter: Jenne, Jeffrey
Date: 2/13/2009 12:17:25 AM
Comment:

Whether it is caused by the underlying medical condition or as a
side effect of treatment for that condition, facial lipodystrophy is a
condition the patient has no control over and reconstructive
treatment should be covered,



Commenter: Bocchino, Carmella
Title: EVP, Clinical Affairs and Strategic Planning
Organization: America's Health Insurance Plans (AHIP)
Date: 2/11/2009 11:00:00 PM
Comment:

February 12, 2009

Steve Phurrough, MD, MPA
Director, Coverage and Analysis Group
Centers for Medicare and Medicaid Services
Mail Stop C1-09-06
7500 Security Boulevard
Baltimore, Maryland 21244-1850
   More...


Commenter: Riggs, Tom
Date: 2/13/2009 7:22:43 AM
Comment:

Yes, I believe these costs should be covered by
Medicare. What is the quality of life for these
individuals without such coverage? What other
medical costs are incurred as a result of
depression and it's downstream impacts witho   More...



Commenter: Larson, Chuck
Date: 2/13/2009 12:14:55 PM
Comment:

Please cover reconstructive tx for facial
lipodystorphy syndrome. This syndrome is very
real and has a profound impact on how one is able
to relate in/around their environment. ie:
work, community, family, friends



Commenter: Poulsen, Lisle
Title: Director of Advocacy and Public Policy
Organization: American Society for Dermatologic Surgery Association
Date: 2/13/2009 1:26:02 PM
Comment:

February 12, 2009

The Honorable Kerry Weems
Acting Administrator
Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-1403-FC
P.O. Box 8013
Baltimore, MD 21244-8013

Re: Re   More...



Commenter: Nissenbaum, Beverly
Organization: HIV Medicine Association
Date: 2/13/2009 3:08:40 PM
Comment:

Please post. This revises HIV Medicine Comments
posted on 2/9/09.

February 10, 2009

E.L. Hambrick, MD
Lead Medical Officer
ReconstructionNCD@cms.hhs.gov

Re: Coverage for Reconstructive Treatments for
Facial    More...



Commenter: Puig, John
Title: Outreach and Prevention for Positives Worker
Organization: Hawaii Island HIV/AIDS Foundation
Date: 2/13/2009 3:15:16 PM
Comment:

[PHI Redacted] I work as the Prevention for Positives worker at my local ASO and have spoken to numerous of clients who have expressed self- esteem issues regarding wasting caused by the medications that they either have taken   More...



Commenter: Bardeguez, MD, MPH, Arlene
Organization: HIV Medicine Association
Date: 2/13/2009 3:24:35 PM
Comment:

Revised Comments re: Coverage for Reconstructive
Treatments for Facial Lipodystrophy Syndrome


Dear Dr. Hambrick:

The HIV Medicine Association (HIVMA) is pleased
that the Centers for Medicare and Medicaid
Services (CM   More...



Commenter: Lumia, J
Organization: U.S. citizen and taxpayer
Date: 2/13/2009 9:10:13 PM
Comment:

If anyone would consider this treatment as
necessary for a child whether their own or not;
then the obviously this treatment should be
covered by Medicare & Medicaid. A sickly and
skeletal face must be considered a complete
detrime   More...



Commenter: Schwartz, David
Date: 2/13/2009 10:12:03 PM
Comment:

[PHI Redacted]

The main issue was whether the drugs, particularly Protease Inhibiters were the reason for the lipoatrophy or whether having HIV caused the condition. There is overwhelming evidence that such HIV medic   More...



Commenter: Shea, James
Date: 2/14/2009 12:24:08 AM
Comment:

[PHI Redacted] Living with HIV is difficult enough without advertising it with the physical signs of HIV.

Denial of treatment for Lipodystrophy is the equivalent of denying a woman reconstructive surgery after breast   More...



Commenter: Sturgill, William
Date: 2/15/2009 10:11:40 AM
Comment:

Please consider covering this treatment. When
your face looks like you are sick (sucken face)
perons's sick that you are. It is very diffucult
to function in todays society. When you are
trying to find employment it the first thing<   More...



Commenter: Merry, Kenneth
Date: 2/15/2009 8:21:24 PM
Comment:

I have never acted on public comments before but
this one hits so close to home that I felt I have
to. Medications in the fight of HIV/AIDS have
come so far in the last 20 years that it has
extended the life expectancy of individuals    More...



Commenter: Land, Bradley
Date: 2/15/2009 11:46:54 PM
Comment:

It is my hope that people making the determination will be mindful and understanding in doing so. [PHI Redacted] I would like people who suffer from lipodystrophy to atleast have the choice to have access to this valuable tre   More...



Commenter: Levy, Grant
Date: 2/16/2009 12:24:14 AM
Comment:

Persons suffering from facial lipodystrophy are
unable to put their "best face forward" to the
world around them. The "D" class drugs caused
this injury to occur. While these medications did
save lives, the lives they left behind wer   More...



Commenter: Robbins, Jerry
Organization: self
Date: 2/16/2009 8:45:34 PM
Comment:

I do believe there would be great benefit in having Medicare and medicaid handle the reconstruction of [the] wasting problem as an AIDS side effect. More people would be able to let themselves go out and work possibly.
Sincerely,
   More...



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