Saving face

Injections of synthetic gel help plump up sunken cheeks often experienced by those on long-term anti-HIV therapy

HICHAM SAFIEDDINE
TORONTO STAR

It's Sunday and Robert, 46, is sitting in his immaculate apartment in a high-rise near Church and Wellesley, the so-called Gay Village. He flips on the TV, the usual accompaniment to his weekly ritual: Sorting the 32 pills he takes every day, from 3TC to Reyataz, into a plastic organizer.

Where AIDS was once about dying, it is now very much about living. And since his diagnosis in the '90s, Robert's main concern has been the quality of his existence. A large part of that is how he looks. But for the past five years, his cheeks have been wasting away and his face has taken on a haunted appearance.

In the village, it is known as "the lipo look" or "AZT face," the latter a reference to one of the first anti-HIV drugs used to counteract the ravages of the disease.

Robert, who insisted on anonymity, heard the whispers as he passed by. He began to loathe the sight of his face and learned to shave without looking in a mirror. He stopped checking himself out in shop windows and wouldn't allow himself to be photographed.

"It is the scarlet letter of AIDS," Robert says of his condition, known as lipoatrophy, which refers to the loss of fat. It so depressed him that he soon became a recluse and rarely ventured out of the apartment, which he shares with his partner of 15 years.

Last November, a 30-minute operation changed all that. Robert became one of the first Canadian lipoatrophy patients to undergo a promising procedure in Toronto where a synthetic gel called Bio-Alcamid was injected into his cheeks to plump them up.

It had been available at a clinic in Tijuana, Mexico, and in Europe, but not Canada or the United States. Not until nine months ago, when Health Canada approved the cosmetic filler on compassionate grounds specifically for people like Robert.

Since it became available in Canada last October, more than 125 lipoatrophy patients have had Bio-Alcamid injected into their faces, and nearly two-thirds had it done at one of five clinics in the GTA. (The treatment is also available in Montreal, Vancouver and Calgary.)

And when Toronto's Maple Leaf Medical Clinic, which treats patients with HIV, started a clinical trial in March for about 30 people, almost 200 clamoured for free injections. In the end, a lottery decided who would get the treatment as part of the study.

No one knows exactly what causes the conditions known, in general, as lipodystrophy, an umbrella term that covers both lipoatrophy and hyperadiposity, where unsightly lumps of fat accumulate under the skin of the back (a buffalo hump) and belly (called Crixi belly, after the drug Crixivan). It is believed that the very drug regimen Robert must follow to keep AIDS at bay disrupts the body's ability to properly store fat.

Feeling like a marked man, Robert fell into a depression, a common reaction among gay men living with lipoatrophy. In fact, Gordon Arbess, a physician who treats people infected with HIV at St. Michael's Hospital, believes one of his patients, a man in his 40s, committed suicide in part because he couldn't bear to live with the condition.

"It maybe a generalization, but in the gay community there is a greater emphasis on physical health and appearance and fashion trends," Arbess says. "The patient did not feel life was worth living the way he looked."

Robert's partner had a hard time understanding what was going on.

"He said I looked beautiful no matter what and he loved me the way I looked," Robert recalls, but that was not enough for a man who has always wanted to look his best.

"I felt healthy but my physical appearance did not reflect that," explains Robert. "And there is still a fear of AIDS and ignorance about it, and the young generation in the gay community don't want to hear about it."

Plastic surgeon Frank Beninger, who has treated Robert among 90 other lipoatrophy patients, said he's been getting calls every week from Canadians and Americans inquiring about Bio-Alcamid.

"Our options (here) have been severely limited," Beninger says. "Some people with lipoatrophy have contemplated suicide ... (Bio-Alcamid) has been a phenomenal treatment that has greatly changed these people's lives."

In the past, treatment centred on the injection of fat harvested from other parts of the body, something people living with HIV were loathe to do since some had precious little to give.

There are other synthetic fillers being used, but Beninger says Bio-Alcamid has several features that make it stand out. First and foremost is its cost, usually between $1,000 and $5,000, depending on the volume required. Bio-Alcamid also takes one or two sessions on average to implant and forms a protective layer once it enters the body. That means it can be removed if too much was injected or minor adjustments are needed. Beninger also says it is softer than other fillers.

The long-term effects of Bio-Alcamid, which is manufactured by the Italian company Polymekon Research, are unknown, since it has only been available in Europe since 2000 and Mexico since 2003. In a 2002 Italian study of 2,000 Bio-Alcamid users between the ages of 17 and 76, 12 people or 0.6 per cent had to have the filler removed after they developed an infection.

In Canada, approval for Bio-Alcamid injections is obtained on a case-by-case basis pending a final decision by Health Canada, which is expected in two to three years. To get the okay, a doctor has to fill out a form citing the impact of the fat loss on the patient. Some lobby groups are already pushing the provincial government to cover the procedure under OHIP much as provincial insurance covers reconstructive breast surgery for cancer patients who have had a mastectomy.

The Maple Leaf Medical Clinic research, jointly funded by Polymekon and Bio-Alcamid's Canadian distributor, Purmedical, will monitor its subjects for two years to evaluate the safety, efficacy and psychological effects of the injections. In Europe, the gel is also used in chins, buttocks and noses to replace soft tissue lost through liposuction, lipoatrophy and disease.

For Robert, who got his treatment free as part of a tiny pilot project (only five people were treated) that preceded the spring study, the results speak for themselves.

Immediately after the procedure, Beninger invited him to look in the mirror.

"It is a shock, because it is a dramatic change and your brain doesn't catch up with the physical change right away," recalls Robert. "But for a fleeting instant, I saw my old self, perhaps a couple of decades back."

Normally, it takes a couple of weeks for side effects such as minor bruising and swelling to go away.

In Robert's case, it took a few months for the swelling to subside completely and he's had to have touch-ups since then, but he says it was worth it. He lost sensation in his cheeks initially and had to shield himself from the sun for the first six months, but now the implants feel perfectly normal.

He stresses, however, that the decision to correct for lipoatrophy through this procedure is personal.

In fact, not everyone is swept away by what Bio-Alcamid can do. Randy Yates, another long-term survivor of AIDS who suffers from lipoatrophy, says selective surgeries like cheek fillers are not for him.

"If that is what it takes to get you up and face the world, then go ahead and do it," says the 43-year-old who was diagnosed with AIDS 10 years ago. "But there should be more emphasis on telling patients it is all right to look this way, as opposed to this push to change it."

"I am not ashamed to have AIDS. I have fought it and earned my scars, which are just part of who I am."

Yates says the social support network for lipoatrophy is not well developed in the AIDS community, and he believes there are other problems more pressing for patients with AIDS than fixing their appearance.

"There are so many other things to worry about such as getting infections, high cholesterol levels, diabetes. Why should I worry about something elective like that?"

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