Impact of Lipodystrophy on the Quality of Life and Self Esteem of People Living With HIV
An Interview With Nelson Vergel
By Bonnie Goldman from thebody.com
April 15, 2009
Hi there! This is Bonnie Goldman, editorial director of TheBody.com.
Today we're going to take a look at body shape changes, an ongoing problem for many people living with HIV. These changes are sometimes known as lipodystrophy, lipoatrophy or lipohypertrophy, but they all involve the same thing: An unusual amount of fat loss or fat gain in specific parts of the body. Some people with HIV have watched their face, legs, arms or buttocks transformed by fat wasting. Others have seen the growth of fat deposits on their backs or necks. Men and woman alike have even watched their breasts swell due to this problem.
These physical changes are relatively well known. But there's another side to body shape changes that receives much less attention: the emotional side. That's what we're going to talk about today: the impact that body shape changes have on the everyday lives of people with HIV.
This podcast is a part of the series "HIV News & Views." To subscribe to this series, click here.
I have with me today Nelson Vergel, a longtime AIDS activist and 26 year survivor of HIV. He runs a popular HIV/AIDS e-mail mailing list and is a frequent speaker at workshops across the country. He has been witness to the emotions tied to these often disfiguring body shape changes, and he's watched the desperation escalate as the years pass without any solution.
Last year, Nelson created an anonymous Internet survey that asks people with HIV to detail the impact of body shape changes on their quality of life and self esteem. The survey results were presented at a major medical conference in London last fall. I am pleased to have Nelson here today to discuss his survey and the rather troubling results.
Hi, Bonnie. Thanks for having me again.
I thought today would be a great moment to talk with you about the poster that you presented at an international conference that was held in London, I believe.1
Yes, in London. The conference was the 10th International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV, which was held this past November.
You are an activist. Isn't it unusual for an activist to present a poster at a medical conference?
Yes, but only because very few activists are aware that we can conduct, and present posters on, socially related studies. My background is chemical engineering and I have an MBA, so I have no real medical background. However, I wanted to do this survey, because no one had conducted an in-depth survey of what people are going through with respect to body changes in HIV.
We've had some studies -- small ones -- where questions about this were asked. How do you feel? Is this depressing you?
They showed that people were experiencing stress, anxiety, low self-esteem, etc. But I wanted to dig deeper into the issue, so I posted a 23-question survey online and The Body actually helped me out a lot by getting the word out. I had 1,100 people answer the survey in a matter of six months. The poster was presented to show the results of that survey.
So you did this survey to meet an unaddressed need?
Yes, my feeling as an activist is that we're moving away from lipodystrophy research. No one is addressing the lack of reimbursement for facial wasting treatments, hump removal or liposuction. We're having a lot of trouble getting these options reimbursed by Medicare, Medicaid, insurance companies and patient assistance programs. So I wanted to let researchers know that this problem is not gone. A lot of patients are suffering from this problem and they're not getting reimbursement and coverage of the therapy.
It's not only a reimbursement issue. Isn't it also a huge emotional issue?
It's extremely emotional. I've been positive for 25 years, and nobody wants to look sick. Nobody. Even if we are not feeling very well. I hate when I go to work and people say, "Oh, you don't look very good." I don't want to hear that or, "What happened to you? You look tired. Are you losing weight?" Everybody wants to look healthy. So yes, it's a huge emotional issue.
Don't you think it's more than just looking sick?
It's also looking older than you are. Looking unattractive. It's being afraid to go out and show your face. Being afraid to go back to work, if you're on disability. Being afraid to be found out that you're HIV positive, if you're in the closet about it. There are many, many issues. This is an issue especially for the many HIV-positive people who are in the entertainment field, hotel management and other professions that require dealing with the public.
The most surprising thing in this survey is that out of 1,100 [At the time the survey was presented at the London conference, only 949 need people had answered. Since the presentation, 1,100 people have responded.] Of the people that answered, 25 percent of them had thought about suicide in the past. For me, that was shocking. The survey also showed that 87 percent of the participants experienced anxiety and depression related to body changes.
That is very shocking. Don't you think part of that pain is due to the general lack of acknowledgement by HIV doctors regarding what HIV-positive people are going through in terms of losing fat in their faces or legs? Some doctors just say, "OK, well just take your pills then."
They don't really say that, because doctors know better. Instead, they say, "Look how well you're doing. Your CD4s are up. You're undetectable. You're alive now."
I have to say, many doctors are really trying hard to educate themselves on lipoatrophy and lipodystrophy options. They really are.
To be honest with you, I don't think we're doing enough to educate doctors about patient assistance programs and about where to send patients when they bring up the issue of facial wasting, a big belly, buffalo hump or enlargement of the parotid glands [the largest of the salivary glands], which when inflamed can be visible as swellings on the sides of the face.
It's not as if doctors don't want to help. A lot of doctors are not educated on the subject, because there haven't been good efforts to train them beyond what we know about tenofovir [Viread] not causing lipoatrophy as much as d4T [Zerit, stavudine] or AZT [Retrovir, zidovudine].
Doctors do not know what options are available to patients with body changes and who is paying for them. They need to be educated about that. So that's my goal, not only via this survey, but also through my Web site FacialWasting.org. I have a list of doctors who are doing different things. And I know The Body has done a great job with its Lipoatrophy Resource Center. You probably are the only ones who have that on the Internet. Yet, we have to do a lot more work on showing resources to people. How do you apply to a patient assistance program to get help with your payments? What are the options out there? Doctors don't really know.
I think it is time to set up lectures and seminars to educate doctors, so that when the patient says, "Look at my face. Look at my belly. Look at my veiny legs. Look at my butt. I can't sit for more than 10 minutes without hurting. What can I do?" The doctor can say, "Look at this table of options," "Call these people," or "Here's a referral."
That's what I want to do.
A lot of people think that this is an old issue. They think that people who were diagnosed in the last couple of years are not going to have this experience and so we don't have to talk about it anymore.
It's almost like we're dinosaurs about to become extinct, you know? [Laughs.] That's an excellent point. If you were recently infected, or were infected in the past four years and you started medications in the past three years, you're probably going to have less of a problem, because doctors are not prescribing the main culprits of facial lipoatrophy and body lipoatrophy, which are Zerit and AZT (this drug is also present in Combivir).
Crixivan [indinavir] causes some problems with insulin resistance and belly fat, but it is also no longer prescribed in the U.S. So yes, your chances of experiencing lipoatrophy are going to be lower, but I'm still hearing from recently diagnosed people taking Atripla [efavirenz/tenofovir/FTC], or a very, very lipid-friendly combination, that are experiencing body changes.
A study done by the ACTG [AIDS Clinical Trials Group] actually showed that 11 percent of people taking tenofovir, 3TC [Epivir, lamivudine] and Sustiva [efavirenz, Stocrin] experience lipoatrophy. That's 11 percent of people who have never been exposed to AZT or d4T, so there is a minority of patients that may have lipoatrophy even though they have never been exposed to the main culprits of this problem.
Isn't it true that we still don't really understand how or why body shape changes are happening?
Not yet. We don't have all the answers. We don't even have what we call a "case definition," meaning researchers and clinicians have not agreed on how we are going to define this syndrome. Actually, it's not a syndrome. It's a combination of syndromes and that's what makes it even more difficult to classify for insurance companies and Medicare. "What is this? What is this diagnosis?"
Now, tell me about your survey.
The survey included mostly white patients who are over 40 years old that have been positive for more than 15 years. Unfortunately, not many Latinos like me, black people, American Indians or Asians took the survey. Also, most of those who responded were male. Maybe more males were exposed to the drugs that caused facial wasting. Or maybe more males are accessing the Internet.
Remember, this survey was only available on the Internet, so it was skewed in that way. And the participants had been positive for around 15 to 20 years. I would say 20 to 30 percent have been HIV positive for more than 20 years, which makes me feel a little good because I usually feel lonely being a long-term survivor who has had HIV for 25 years. Out of 1,100 [people, 275 were living with HIV for more than 20 years.
Eighty-four percent of these men and women were exposed to Zerit, for example. Of course, many of them are experiencing lipoatrophy, facial wasting and all that. Eighty percent of participants were exposed to AZT. Fifty-one percent had taken Crixivan, which is another drug that has been implicated in some of these problems.
My survey is a little bit biased since it includes so many long-term survivors who have been exposed to a lot of these old drugs. They have experienced more problems with body composition and body changes.
Will this happen to newly diagnosed people who are taking Atripla? I don't think it'll be as big of a problem. We do have to still research what's happening to those 11 percent that I mentioned before, but at the same time there are thousands of us.
Out of 1.2 million people in the United States who are HIV positive, around 450,000 are taking medications. Out of those, maybe half, probably more have been exposed to HIV medications for over 10 years. So there are around 250,000 people that may have somebody changes in this country.
Yes, we are the older generation. Yes, we need help. I hear clinicians say, "Our research is more focused now on insulin resistance and metabolic syndrome." I keep reminding them that we need to deal with fat accumulation. Nobody has a real good answer about why our bellies increase. Even in the new studies with Atripla, we see fat increase in the visceral area (in the organs area). So belly fat accumulation is still happening.
What we're not seeing as much is lipoatrophy, which is fat loss under the skin. We're not seeing as much of that, but we're seeing fat accumulation. We're seeing muscle loss too that is not being researched.
So Nelson, your survey attempted to describe the problem in greater detail.
Yes. What are people suffering from? What are the needs out there? It is a biased sample, because it did not include that many people who were infected under five years ago.
I'm going to tell you something else. I asked the question, "What kind of body changes are you experiencing or have you experienced?"
Sixty-three percent of them said belly fat gain.
Seventy-eight percent said facial wasting.
Seventy-two percent said butt wasting.
Sixty-eight percent said veiny legs and arms.
Twenty-two percent said increased breast size -- some women and men can have an increase in their breast tissue.
So, as you can tell, most of them have experienced some changes and they're pretty severe.
To the question: "Have you experienced depression or anxiety due to the body changes?" Eighty-eight percent said yes. Eighty-eight percent. This is not vanity. People have said, "Get over it. We're older. We're not ever going to look as good as we used to."
This is bullshit. I tell people that when you look 20 years older than you are, when you look like you are going to die, when you look like you are sick, or when you have 300 to 400 T cells, you worry. Of course you do. Probably the most important question I asked people was, "What has changed in your life because of this?" The number one answer: 74% said decreased sexual activity. Number two was stopped socializing and going out to meet people.
People are feeling so self-conscious. They're not going out to meet new people and, obviously, they're not having as much sex, because they're afraid to be rejected or they are being rejected for their looks.
Fifty-one percent said they had stopped dating.
Sixty percent said they "worry too much about people finding out they are positive."
Fifty-seven percent said they stopped looking at themselves in the mirror. They probably just comb their hair in the morning; When we were young, you remember how many times we used to look at ourselves in the mirror?
So a lot of self-esteem issues?
Yes. Most change their clothing style, wearing more baggy clothing to hide bellies. Thirty percent said they have depleted their money in search of a solution.
Then I asked them in this survey, "What have you done to try to reverse your body changes?" Obviously, the two top things people say are, "I'm exercising more," 73 percent, and "I'm watching what I eat," 72 percent.
Fortunately and unfortunately, we have very few studies -- tiny, tiny studies -- on exercise that have shown some benefits in body shape changes. With exercise we have seen decreases in visceral fat and increases in muscle mass. Actually, I think exercise therapy should be a therapy in HIV and should be reimbursed as such. That's one of my activist goals.
Many people mentioned that they watch what they are eating because of their body shape changes. Unfortunately, we only have maybe two studies -- very tiny cohorts -- that show that there may be some influence with respect to what we're eating, but not really. We're not seeing that dramatic of a difference by decreasing carbohydrates.
Actually, there's not a single well done study that shows whether or not, for instance, we will have any improvements in visceral fat if we decrease our carbohydrate intake. Nobody has done that study and it makes sense to do it.
What else? Forty-one percent of the people who took the survey said that they had had their face injected with a filler or a cosmetic product, which is probably what most people would like to do, because there are some options like Sculptra [an injectable product made of poly-L-lactic acid; also known as New-Fill] and Radiesse [a dermal filler made of calcium-based microspheres suspended in a water-based gel] in the United States that have patient assistance programs.
Forty-five percent took supplements even though we have no data whatsoever on supplements. Forty-seven percent took testosterone, though there could be many reasons for that. Maybe people had a low sex drive. But testosterone has been shown to decrease waist size in one ACTG study, in which a one-inch decrease in waist size was seen, though it was mostly fat under the skin, not visceral fat that went down.
Some people have used growth hormone. Some people have used anabolic steroids. Very few people undergo liposuction.
A hot subject for a lot of people was butt implants. People are getting their buttocks fixed, but very few can afford that, because it's a lot of money and you have to go to Mexico or Canada for the procedure. It's only for the few that have over $6,000 to spend. Some people are using padded underwear. That's a really cool option. It only costs $25. [For a list of suppliers for butt enhancers, visit TheBody.com's Lipoatrophy Resource Center.]
People think it's cosmetic, it's superficial, it's narcissistic. It's really not. People just want to look normal and they want to feel comfortable.
I've gotten some work done down there too. I usually try something before I talk about it, but I may not be as poor as most people. Unfortunately, more than 60 percent of HIV-positive individuals in the United States are on Medicare or Medicaid.
About the butt, it is painful to sit when you have wasting there. When I go to give lectures, a lot of people, ask me, "What kind of chairs will you have? I'm hoping you will have some padded chairs, because it really is painful."
I think whoever comes up with an option for buttock wasting will make a lot of money in this country. Why? Because buttock wasting is related to functional capacity and pain. Anything related to pain can usually get better reimbursement from every insurance company. It may be perceived as cosmetic, but it is a pain-related issue.
Something else I wanted to bring up is an option for belly fat (lipohypertrophy). A company in Canada, EMD Serono, is doing research on a growth hormone precursor that has shown some good results: a 13 percent loss in 26 weeks. I don't think it's great, but I think it's OK.
It's called tesamorelin and it's a product that you inject under the skin in your belly, a lot like growth hormone used to have to be. But the good thing about the drug is that it does not cause, supposedly, side effects such as increased blood sugar, body aches and carpal tunnel syndrome like growth hormone used to. It may, and I think it probably will, get approved in the United States within a year. [For more on tesamorelin, click here.]
I think we're going to see a lot more awareness of lipohypertrophy once this product is approved and marketed to doctors.
My concern is that it will probably be conceived as another cosmetic product by Medicare, Medicaid and insurance companies and it may not be covered or reimbursed. Daily injections will probably be very expensive. We'll probably face the same struggle we're having right now trying to get insurance companies to pay for facial lipoatrophy options like Sculptra, Radiesse or even Silikon microdroplets. (By the way, you can find more information on my Web site FacialWasting.org. )
I would say the rejection rate for reimbursement is probably 90 percent. Only the HMOs [health maintenance organizations] like Kaiser, and sometimes even the VA's system [U.S. Department of Veterans Affairs], have it in their formulary. So we're seeing some progress, but not big enough. I'm trying to get experts, third-party payers, activists, the FDA [U.S. Food and Drug Administration] and people from different companies to sit down at a roundtable to come up with a plan regarding how we can change policies to include HIV-related body changes as a clinical condition that requires reimbursement.
Some doctors from Brazil presented a poster at the International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV where they show that the government has implemented a countrywide program that pays for various lipodystrophy (e.g., facial wasting and belly fat accumulation) treatments, such as liposuction. Canada offers some help too, as do The Netherlands and many countries in Europe. So we're lagging behind. It's been 11 years since lipodystrophy was first mentioned. It is time to do something about it.
Talking to the point of who's going to pay for these treatments, 62 percent of people in your survey had to pay for it themselves. What was encouraging was that at least 18 percent had insurance to pay for this.
Yes, that's good. It's actually not as discouraging. Eighteen percent of people found insurance companies to pay for whatever they used. But 62 percent had to pay for it out of their own pocket. And to get your face fixed with Sculptra or Radiesse, if you have moderate to severe facial wasting, it costs around $7,000 to $8,000 easily.
Is there a patient assistance program?
There's a patient assistance program. If you make under $40,000 a year, you can get full coverage for the Sculptra, but you still have to pay for the doctor's fees to inject it in your face. Most doctors charge around $350 to $400 per session and most people require at least four to seven sessions, because it is not a permanent product. It's a product that builds up slowly in your face and then some people need touchups a year later.
For Radiesse, there's also a patient assistance program. They have a discount for people that make less than $40,000. [Very few people know about Radiesse. Radiesse is another product that has shown very good results. It probably lasts a little longer than Sculptra. You need also at least four sessions for that.
So there are two products that are approved in the United States: Sculptra and Radiesse. Both have patient assistance programs and you can find out more online. Sculptra.com has a list of doctors in every ZIP code that have been trained -- and Radiesse does too.
There's another option called Silikon microdroplets. It is permanent. It takes also around four sessions, but it's not covered or reimbursed, because it's not approved. It's used off-label.
You've described the problem and you showed that most people are paying for treatment by themselves. Most people are very concerned about this issue and the survey was presented at an international conference. What's the next step?
I think we need to do a few things. We need to increase awareness that this problem hasn't gone away. We need to, as I said, set up a brainstorming or roundtable discussion that includes the main players -- not only the patient community and activist community, but also doctors, researchers that work in lipodystrophy, people from Medicare and Medicaid, and people from third-party payment companies -- to put together some kind of plan.
Do we need more data? What are the CPT [current procedural terminology] codes that actually get reimbursement? There are some out there, but they're not well defined.
How can we convince insurance companies that this is not only a cosmetic issue? That this is a clinical issue that impacts quality of life and can result in depression, anxiety and even suicidal thoughts. It even impacts adherence; some studies have shown that adherence tends to drop when people are very afraid of their medications and body changes.
I foresee this booklet that we all put together with recommendations that then affects a policy change. I would love to see a bill passed by Congress.
With breast cancer, they had to do this too and they passed the bill so that after a mastectomy, breast reconstruction is covered by private and public insurance. I want to see an HIV lipodystrophy reimbursement bill in two years, no longer than that. It will take a lot of work. Hopefully, we have a better administration in Washington, D.C. So that's what I want to see, but we have to start with some kind of document.
A lot of people listening to this have been feeling desperate. And now that they're hearing this, I imagine they're feeling very hopeful. Is there anything that people listening to this can do to help you?
They need to e-mail me. My e-mail is NelsonVergel@yahoo.com, NelsonVergel@gmail.com, NelsonVergel@aol.com. It's very easy to remember. Just write to me and let me know you want to help. I have to tell you, Bonnie, and I'd say that this is the most disturbing thing that I've learned, there's an 80-20 rule in everything in life. When there is a problem, 80 percent watch while 20 percent do something about it. Eighty percent of people complain and bitch and moan and are depressed, and yet, they don't think they have the power to make a change.
They think they're too small to make a change. They think their voice doesn't count. But you know what? In the U.S., writing a letter to Congress (or to your representative or senator) -- you could even pick up the phone -- if that's all you did, you did a great thing. [Use these links to contact your representative.]
We need to empower people to know that there's something they can do. I read this book The Tipping Point -- we need to get to a tipping point in this problem where there are so many people complaining to their congress people that a bill is passed. I really think we need a bill and I think we can do it.
It sounds like you're energized and you just need people to help you.
Yes, I need people to know that they're not little. They are not small. That they are powerful.
Know that without leaving your house, you can do a lot. You can write letters. You can call. You don't have to leave your house.
I think people want concrete things that they can do, because they don't necessarily know what to do.
You can either write about your case or you can write about a friend's case. Anybody that can vote for a seat in Congress can complain about something, even if you're not directly suffering from it. You don't have to have lipodystrophy, by the way, to help us either. You don't even have to be HIV positive. So, e-mail me. I'm trying to come up with that formatted letter that people can send to their representatives.
This has been really interesting, Nelson. I think this is the beginning of hopefully getting this covered by insurances and getting more attention paid to this issue.
Yes, because we only get what we deserve. If we're not doing enough to change something, then we don't deserve the change. So I tell people, if you think you really deserve somebody to take care of this for you, you need to get involved, because otherwise you don't deserve the change. Unfortunately, there are a lot of us that may be tired or depressed. When you're depressed or have anxiety, as I think a lot of people do in this case, you don't feel like picking up the phone, you don't feel like writing a letter. So I understand that too. It's very hard to be empowered when you're depressed.
It's particularly hard to feel empowered when you have a stigmatized disease. There are layers of issues that are difficult to deal with.
Yes. We haven't even talked about the other problems related to metabolic disorders, such as bone density loss. Some of us are losing bone density. Some of us have diabetes and insulin resistance. Lipodystrophy is not the only body issue that we face. There are lots of issues internally that are happening: fatty livers and stuff like that. Those are all a part of this syndrome, and should also be discussed.
I would suggest that if you haven't visited the lipoatrophy resource center of The Body, read the information there. It's great. There are videos. There are patient testimonials. There are resources. FacialWasting.org is one of my Web sites. You can always e-mail me. You can always ask me questions in my nutrition and exercise section of the "Ask the Experts" forum.
In addition, I have a group called Poz Health at Yahoo Groups that has 3,000 members that discuss these things too. The Body also has a place you can connect with others, so you are not alone.
I tell people, "You are not alone." If you are home worrying about this, you are not alone. There are maybe 250,000 of us who feel just like you. Connect with those people, network with those people, because you're not little. You're powerful. Even if you are feeling depressed, even if you are afraid of disclosing, you still are powerful. We need to get this done.
Thank you, Nelson.
This transcript has been lightly edited for clarity.
Vergel N. Impact of body changes on the quality of life of HIV-positive treatment-experienced patients -- an online community-based survey. In: Program and abstracts of the 10th International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV; November 6-8, 2008; London, United Kingdom. Abstract P-67.