"I am 50 now and anticipate another 30 years on this earth. The one thing that sucks is that I have to live those 30 years looking like a freak."
In 2008, activist and long-term HIV survivor Nelson Vergel conducted an online survey of more than 1,000 people living with HIV to find out how lipodystrophy, or body shape changes, impacted their lives. Most respondents had been diagnosed more than 15 years prior and had taken a wide range of HIV medications. The survey asked whether participants had felt depressed or anxious, or altered their behavior, due to the changes in their bodies.
The results? More than 87% of those surveyed had experienced depression or anxiety due to this condition. Almost 74% had less sex because of it. Sixty-five percent stopped socializing; 60% worried that others could tell from their appearance that they were living with HIV. Nearly 29% had drained their finances looking for solutions. And a full quarter had considered taking their own lives because of the effects of lipodystrophy on their bodies.
Most devastating of all, Vergel believes that if he conducted the survey again today the results would likely be similar.
A Range of Changes
Lipodystrophy refers to a disturbance in the way a person's body stores, uses and makes fat that can result in visible changes to the way body fat is distributed. Lipoatrophy (fat loss) and lipohypertrophy (fat gain) fall under this umbrella. In people living with HIV, these conditions can show up as a "buffalo hump" on the back below the neck; sunken cheeks and buttocks or skinny, veiny limbs due to fat loss; breast enlargement (gynecomastia) in men as well as women; and fat increases around the abdominal area (visceral fat) and other parts of the body.
The specific causes of HIV-related body shape changes remain mysterious. It's well documented that Retrovir (zidovudine, AZT), Zerit (stavudine, d4T) and Videx (didanosine, ddI) are linked to fat loss, and that early protease inhibitors (PIs) like Crixivan (indinavir) played a key role in fat gain. "As good as these drugs were in their day to save lives," says longtime HIV care provider and researcher Dr. Benjamin Young, "they caused a lot of collateral damage" -- including the disfiguring, often stigmatizing condition of lipodystrophy. These drugs virtual elimination from U.S. HIV treatment regimens have cut down on experiences of body shape changes in the community; moreover, switching regimens can help in regaining lost fat. But for fat accumulation, switching treatments offers no benefit. "It's like another organ," Vergel explains: "Once [fat] grows, it's very hard to get rid of."
Fewer and Fewer Cases
The reality is that those who have taken only more recent HIV med regimens will not see such dramatic changes in their bodies, and clinicians report seeing fewer and fewer cases. In fact, a recent large study showed that abdominal fat gain after starting HIV meds had more to do with how high people's viral load was when they started than with their specific drug regimen -- amplifying the call for people with HIV to start treatment early. This fat-gain study effectively destroyed the notion that integrase inhibitors, the newest HIV drug class, are more body-friendly than boosted PIs.
Overall, this is good news for the newly infected, but for many who've been living with HIV for decades, their treatment history is written on their bodies and faces.
"Has research on this disfiguring side-effect gone on the back-burner because everyone says these new meds don't cause it, therefore no one cares about the ones who are wearing long sleeves and pants in 90 degree weather ... too bad for them?"
Once upon a time, there was dedicated research interest in treating lipodystrophy in people with HIV; that interest has waned. Studies looking at a number of promising products to combat body shape changes in people with HIV, including leptin and low-dose growth hormones, were discontinued. "This isn't even part of activists' conversations anymore," Vergel remarks, "because we have nothing exciting to talk about."
Lipodystrophy "seems to be turning into an 'orphan' condition that is seen only in long-term survivors, who are shrinking in numbers and also growing older," explains Jeff Taylor, an activist with AIDS Treatment Activists Coalition, Let's Kick Ass Palm Springs and The Reunion Project. He says this "makes it all too easy for clinicians to blame it on age." Meanwhile, says Vergel, long-term survivors experiencing lipodystrophy may have problems finding clothing that fits, may feel bloated or out of breath because of extra visceral fat putting pressure on their organs, and may not want to go out or look in a mirror.
"People are asking about lipodystrophy all the time," Vergel says of his "Ask the Experts" forums on "Aging with HIV" and "Nutrition and Exercise" on TheBody.com. There are fewer questions about fat loss than fat accumulation, in part because effective treatments for lipoatrophy exist. In the U.S., there are two products approved for facial wasting in people with HIV: the injectable fillers Sculptra (poly-L-lactic acid, New-Fill) and Radiesse (calcium hydroxylapatite, Radiance). Unfortunately, these products can be difficult to access because in recent years once-generous patient-assistance programs have become more restrictive or fallen away altogether. For fat loss in the buttocks, which can cause severe discomfort when sitting, a long-term HIV survivor developed butt-lifting shorts to increase volume in the area. (Check them out at LipoWear.com.) Buttock fillers like PMMA (polymethylmethacrylate, Artefill), while also expensive and challenging to access, have also provided some relief.
An Injectable Against Accumulated Fat
But what about treating fat accumulation? People living with lipohypertrophy got a burst of hope in 2010, when the U.S. Food and Drug Administration approved Egrifta (tesamorelin) as the first-ever treatment for belly fat gain in people living with HIV. Egrifta is also an injectable, but rather than a professional administering the product, as with Sculptra and Radiesse, the injections must be done at home -- once a day -- with a solution mixed from a powder. "It's quite a few steps," comments Vergel. Its price can also be prohibitive and the product can take months to show results, which are not visibly dramatic if they occur at all. Add to this lukewarm assessment the fact that Theratechnologies, the makers of Egrifta, experienced shortages of the product in 2014 and temporarily stopped making it and it is no wonder that hope for this treatment has begun to flag.
Interest in Diet and Exercise
"With regular exercise and weight loss, will the fat deposits [on my body] go away, or if not, reduce?"
More than 70% of respondents to Vergel's survey reported exercising and watching what they eat to combat body shape changes. Many participants in his forums inquire about such steps, and Vergel has dedicated numerous articles, posts, and even videos to sharing his fitness wisdom. But the benefits of diet and exercise interventions in reducing visceral fat gain also need further study -- ideally in a combination approach with Egrifta.
Vergel wonders if the makers of Egrifta have promising reports to share about its use that could renew interest in the product. If it were his money, he says, he'd fund online peer support for patients, especially during their first month using the injections. ""Community-based education should be coming from community peer educators who have gone through the experience of lipodystrophy," he says. "Egrifta comes in a wonderful package with lots of brochures, but people benefit from peer support." He'd also bankroll small studies on the use of Egrifta alongside other products like metformin, an old diabetes drug with fat-burning potential that's been explored as a treatment for lipodystrophy in people with HIV.
More Research Needed
Fellow activist Taylor agrees. "We desperately need research into multi-modal approaches," he says, "since the single treatments do little, if not nothing. These kind of combo studies are difficult to design and conduct, and expensive -- but they're all we've got." Taylor adds that this kind of research needs to be a priority for people studying aging and HIV, and for long-term survivors themselves.
Dr. Young believes that advances in lipodystrophy treatment will be informed by more basic research into fat, and how HIV affects it. He also champions exercise. Along with its numerous health benefits, it's also helped his patients with the visual appearance of visceral fat. He also supports advocating for increased access to existing treatments, however imperfect. That's how he originally learned about Sculptra (and got trained to administer it): because his patients consistently asked him about it. "The goal is increasing access to things that improve lives," he says.