February 3, 2009
Change of Face: Should Government Pay for Lipoatrophy Treatment?
by David Evans
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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comments 90 - 104 (of 105 total)
Mike, , 2009-02-04 13:26:41
I am grateful for the medicines that are keeping me alive but hate the way I look when I see myself in the mirror...it's hard to go out and be seen in the public because facial wasting is so debilitating to one's self-esteem. Although I've been undetectable for 11 years I feel like people who look at my face know the kinds of medicines I'm on.
John Mccarthy, Madison WI, 2009-02-04 13:20:06
I have spent over 5K to try to help me feeling better about my appearance that has been devastaed HIV and HIV medicines. My appearance has caused great depression in my life. I have had cheek inmplats and 10 million Scultra Injections but still need something to fill in my temple areas. I am scared to try to meet anyoneand many times dont want to even be in public. This is far from a cosmetic issue.
Jeffrey Link, St. Louis, 2009-02-04 12:43:38
Good health is more than lab test results or getting an "all's well" from your doctor. Being "healthy" is a combination of strong physical, mental and dental health, combined with a positive self-image and a desire to STAY healthy. The impacts of facial wasting (whether caused by the disease or the medications that treat it) is devastating and can cause a downward spiral in good overall health, and this is a documented fact. Facial wasting is a MEDICAL condition and should be treated as such.
William B. Butler Jr., Haddon Heights, 2009-02-04 12:43:13
Definately!!! Dealing with AIDS for over 22 years and still here. However, I would love to have some assistance in paying for facial fillers.
We can bail out Wall Street with millions and they get million dollar bonus but we who have faced death and given back to the community by speaking and sharing our stores are left behind.
This is outrageous!
james, USA, 2009-02-04 12:37:48
The Goverment wasted more money in seconds what it would cost have the procedure done. What a waste to everyone who worked there whole life of the promises and to really find out its a joke.I have turned into a recluse what a waste.
Robert, Shreveport, LA, 2009-02-04 12:34:40
I had severe loss of fat in my face, making me look scary, and I was severely depressed, to say the least. Now, I've had treatment and I feel good about myself and can go out in public and hold my head high. I'm a productive & working citizen again.
james pendleton, pocola, 2009-02-04 12:33:33
Why wait we need to act. The goverment wastes more money in one second that it would cost to have the procedure done. I see my new face and it looks bad but I have nothing, My illness has taken my face. So I have been a reluce. Which is a sad state.
Jason Harbour, Dallas, 2009-02-04 11:51:59
I've spent over $15k in HIV treatment this year alone and facing homelessness in 2 days. $18 billion in exec bonus pay - but we can't get help.
Gary, Danville, IL, 2009-02-04 11:44:38
The loss of fat in my face has left me looking like death itself, and has made any attempt at employnment or social interaction completely unattainable. Please change this policy.
Ted, , 2009-02-04 11:39:24
OMG yes. Especially in rural areas. If you look like you're sick you don't have a chance of getting or holding a job. I mean c'mon we're not talking jaw or pec implants. Just help HIV stay anonymous at work and in narrow minded bible belt parts of the country.
Alan Lancaster, Gadsden, AL, 2009-02-04 11:21:11
I am a long-term survivor of AIDS; I will pass the 22 year mark this month! I am so thankful to be alive, and thankful for the medicines that have saved my life. Unfortunately, my face is lipoatrophied, and it makes me extremely self-conscious of my appearance. It would be a tremendous asset to my health and well-being if Medicare would cover the expense of correcting my facial wasting. Being on SSD, there is no way I can afford it on my own.
James, Winston-Salem NC, 2009-02-04 11:08:31
Fat redistribution is problem. Wasting of the face and buttocks causes disfigurement, embarrassment and discomfort, but so does where the fat goes. Buffalo hump and fat under the chin are also nasty side effect and treatment should be available for that too.
Omar, Lexington, NC, 2009-02-04 10:09:39
I have facial wasting which I have to see it every day in the mirror. Since I have this changes in my face and body, I do not participate in any social activity and avoid any outdoor activities because I feel embarrassed of myself. I do not have the financial mean to correct this issue and instead I am dealing with clinical depression which cost more to medicare because of the therapist visits as well as my antidepressants. Please, include this necessary treatments for people living with HIV/AID
Ingrid Kloet, Rio Rancho NM, 2009-02-04 10:04:09
Yes I am thinking this treatment for facial facial wasting should be paid for, I know out of experience with friends in Europe they feel so much better after treatment.
They are feeling and looking better. And it works also inside a person after this treatment.
For me it is a big YES.
steven g., new albany ,in., 2009-02-04 10:01:36
comments 90 - 104 (of 105 total)
yes we need help with treatment .53 found out in 1990 .take my meds everyday and doing great but have the face thing and most of all the pain of fat loss in my butt hurts to sat very long or ride in a car .if only part was paid my a plan would help......thanks keep up the good work.
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