February 3, 2009

Change of Face: Should Government Pay for Lipoatrophy Treatment?

The Centers for Medicare and Medicaid Services is accepting public comments until February 16 to help it decide whether to cover treatments for facial wasting. Sharing your story, or the story of a loved one, could help secure coverage of these therapies for HIV-positive people who need them.

Study after study shows that HIV-related facial fat loss has a profound effect on a person’s life, ranging from isolation and depression to HIV treatment adherence problems. While the condition, called lipoatrophy, also affects the arms, legs and buttocks, it’s facial wasting that is often most visible and, as a result, the most stigmatizing. “Facial wasting is like the scarlet letter of HIV. It takes away your anonymity and declares to the world that you’re HIV positive,” says Nelson Vergel, a Houston AIDS activist.

The face is also the part of the body that’s easiest to restore with temporary or permanent filling agents, at least for those with the cash or credit to pay several thousand dollars to a trained plastic surgeon or dermatologist. Until now, the government has considered HIV-related facial reconstruction a cosmetic procedure and therefore not coverable by Medicaid, Medicare or private health insurance. All of that could change very soon—with your help.

Only rarely does the average person living with HIV receive an open invitation to help the federal government shape its health policy. Between now and February 16, the Centers for Medicare and Medicaid Services (CMS), a branch of the federal Department of Health and Human Services, is accepting public comment on reconstructive treatments for HIV-related facial wasting. AIDS activists who’ve long advocated for the government and private insurance to cover such treatments say that a groundswell of comments from individuals and organizations could finally make this hope a reality. Of course, it will be critical that such comments make the strongest case for coverage of this vital treatment. Following is a primer on the causes of facial wasting, the impact it has on people’s well-being, and the rational for ensuring that everyone with the condition has access to reconstructive treatment.

Causes and Conditions

When doctors first noticed that people with HIV were losing body and facial fat, they thought it was due to the wasting syndrome that was so common in the late 1980s and early 1990s. Then, because protease inhibitors had recently been introduced, experts feared they could be the cause. Ultimately, numerous studies proved that three of the older drugs were the culprits. The worst offender turned out to be Zerit (stavudine), followed by Retrovir (zidovudine). If a person stopped taking the offending drug, the fat loss usually halted, but the fat almost never returned.

Vergel, who has led the charge for better access to treatments for facial wasting and runs a web forum on the topic, says people contact him all the time and tell him they are terrified to start HIV treatment for fear of facial wasting and ask him how to avoid it. “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,” Vergel says.

Vergel believes that this research demonstrates that treating facial wasting is medically necessary—the standard that must be met if it is to be covered by both government and private health insurance.

The only treatments approved by the U.S. Food and Drug Administration (FDA) for HIV-related fat loss are injectable artificial fillers that help collagen form under the skin, and these are approved only for the face. Both fillers act in a similar fashion and are considered semi-permanent. It usually takes several courses of treatment to restore the face to normal proportions, and people often need to repeat the treatment within a couple of years. Each course of treatment can run in excess of $5,000 when the cost of the fillers is added to the cost that most trained practitioners charge for the consultations and injection procedures.

The CMS process of collecting public comment will help the government determine whether facial wasting treatment meets the medical necessity threshold. “It’s critical that people make the point that facial wasting can be totally debilitating and that facial reconstruction is just that, reconstruction of something that the [HIV] drugs took away. This is not cosmetic. This is not about vanity,” Vergel says.

Vergel also makes that point that private health insurance companies usually follow whatever course the government takes with Medicare and Medicaid. He says that even people with private insurance should send in comments.

To share your story, advocate for a loved one or make a declaration on behalf of your organization, visit the CMS web site here and click on the orange “Comment” button in the title. Vergel says that comments should make the case that the treatment is reconstructive, rather than cosmetic, and elaborate on the mental and physical toll that facial wasting can have on a person.

Search: Facial wasting, lipoatrophy, lipidystrophy, facial fillers, Medicare, Medicaid, insurance, Nelson Vergel

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Previous Comments:

Drew, Austin, 2011-09-13 22:03:42
I have lived with HIV for 26 years and have definitely been affected by lipoatrophy and lipodystrophy. My arms and legs are thin yet my waist is huge, with no butt to cushion me when I sit down. It makes it uncomfortable to put on shoes or pants and my legs tire when I have to walk or sit for long. My cheeks are drawn in and I can see people react when they meet me. I am glad to be alive, but don't have much of a life. I want to be myself again.

Tshepo, GP,South Africa, 2010-11-12 04:23:47
I have sufferd severe lipoatrophy as a complication of ARV treament I have been taking for 10 years.Profoundly negative side effects,wastage on my limbs and buttocks have a negative effect on my appearance,mental health,self confindence and esteem.Medical aid refuses to cover the "reconstructive surgery".Insurances should pay for this surgery

dennis rozycki, monroe,mi, 2010-08-25 23:11:06
i have been hiv positive for a few months now. i have severe anxiety when i think about my facial muscle and tissue disappearing. its bad enough to have to live with hiv but when you no longer have the choice of the whole world knowing or not knowing because its obvious in your face,that makes me sad.i just want to look like me. the wasting causes severe depression and isolation in hiv infected people. most insurances cover vagra for god sake, why isnt something like this taken care of?thank you

melissa, brooklyn, 2010-03-21 08:01:47
I dont even wanna look in the mirror..I cant afford to go for anytreatments.I recieve 1 check a month and have a 5 year old daughter. please help us.I am very depreesed i have my familyies support.,but i ned to feel better about myself and i dont think that will happen untill i recieve treatmrnts for my facial wasting

Ellie, Lowell, 2010-01-20 17:57:45
Yes, I have HIV and had taken Zerit for over 12 years, and I have seen the facial wasting. I am in favor of the health insurance covering for fillers, especially when a person that suffered from HIV and has taken Zerit or any other type of disease that affect a person facial. Let us know when this will be approving because we needed, and it will help to improve our self-esteem. Thank You.

Kimberly, Maryland, 2009-11-12 11:34:19
I do not have hiv but i do have a disease that causes fat wasting it is called lupus panniculittus. I was once a very pretty girl now i find myself looking down when i walk and avoiding people. I was once very out going now i tend to shy away.I pay 100% of my insurance my job does not pay anything at all. Insurances should pay for this procedure because it not only helps yor apperance it helps us mentally and mental health means alot.

bill boston, Boston, 2009-05-01 20:33:43
Yes Absolutely. Facial wasting is extremely distructive to one's self-esteem. There should be no question about this. All Insurance companies as well as medicare should be required to cover facial fillers and restruction procedures.

ELiza, unity, 2009-04-24 10:53:47
Why shouldn't the feds pay for the lipoatrophy? My insurance paid for my new breasts when the girls I was born with were removed because of cancer, so why shouldn't ALL health coverage plans pay for the treatment?! I think the treatment should be covered, it helps a person look and feel better about themself.

John Johnson, Trenton, 2009-04-12 19:12:19
I wish my doctor had told me before prescribing Zerit, what could happen to my fat distribution. However, the stigma in trying to find or remain in the workforce are met with discrimination. The public is cruel. It is a constant battle to look at my face, and the hump on my back. I feel as though I am deformed and understand the Frankienstien story so much more now. Why must I be made hideous? Most of my time is spent in solitude now and I often contimplate suicide.

Joe, Chicago, 2009-03-20 00:28:23
I have had HIV since 93. I developed severe lyphodystrophy and facial wasting. I work in the health care industry and having this severe facial wasting, is an announcment of my disease in the medical community. I hear talk behind my back all the time. People who used to come to me for assistance at work now avoide me. It causes great depression. I think it should be covered, without question

Kayla Lysak, Johnson City, 2009-03-12 23:32:57
Yes I feel that this procedure should be payed for. Just because a person has aids does not give us the right to refuse them treatments that will make their lives fuller and richer. I have a very dear friend with AIDS and he deserves better than he is getting because he is a very special person and Ifeel he deerves every chance to make his life everything he dreams it could be.

cheryl wagner, deerfield beach, 2009-03-06 07:59:16
I am a women with AIDS for over 20 years now. got sick too young so only on SSI & mediciad. If my face gets any skinner it will dissapear. I receive 674.00 and of course with medicaid being my only disgusting health care, not able to work, sick and also health care will be taken away. I am one of the people espeically as a YES straight women that would really benifit from this. Come on after being one of the 1st women in the GMHC, it would be nice to have lips and cheeks again LOVE

Jacob, New York, 2009-02-25 00:42:45
I was diagnosed 2 months ago and being able to live my life the fullest is the most important thing for me now. I simply cannot imagine how that would go with Lipoatrophy. It has nothing to do with vanity, not even beauty, just simple dignity and allowing positive people to live their lives.

Chris, Los Angeles, 2009-02-19 22:47:11
You know you would think insurance would pay for it since the FDA has approved it for facial wasting (Sculptra)caused by HIV meds

Sally, , 2009-02-17 10:32:02
Also it's important to review the procedures and materials that are being used. I have a friend with facial wasting that is receiving treatment for a while but I just can't see any improvement, or just a little. He says that his insurance pays for the chemicals but the doctor, which in my opinion is a crock because he is not injecting the amount necessary to make real difference. I know other people that have it done in other countries and they look just perfect once again.