John Wallace spends his days alone.
Most mornings, he wakes at 7 and sinks into his spot on the couch in his neat but worn South Boston living room. He swallows a pill to quell his upset stomach, eats breakfast, takes eight more pills, and settles in for 16 or more hours of television.
At 1 p.m., Wallace eats a sandwich while watching “Days of Our Lives,” the favorite program of his mother, who died in 2002. “I call it lunch with my mother,” he said.
Wallace, 64, rarely leaves his apartment. But when he does, he said, he is met with stares, double-takes, children asking parents, “What’s wrong with that man?”
Wallace suffers from lipodystrophy, an atypical distribution of fat brought on by an interaction between HIV and the toxicity of medications introduced in the 1990s to treat the virus. The disorder causes fat to gather around the neck, in what is called a “horse collar,” and on the upper back, in a “buffalo hump.”
‘Having anything that marks them as having HIV, in and of itself, is devastating.’
He is one of many with the condition, doctors say, who rarely leave home, avoiding the eyes of strangers by disengaging from the world.
Wallace has sought approval for liposuction to remove the fat deposits three times, through two different doctors. Twice, MassHealth rejected his claims, declaring the treatment cosmetic, he said. A third time, his doctor declined to submit a claim.
A spokeswoman for MassHealth said the program covers lipodystrophy treatment when it is medically necessary, but prior authorization is necessary. She did not comment specifically on Wallace’s case.
Dr. Camilla S. Graham, a specialist in infectious diseases at Beth Israel Deaconess Medical Center who has treated Wallace for about 14 years, said liposuction is medically necessary to correct his condition. Several years ago, she said, Wallace became extremely ill and lost about 100 pounds. But the fat deposits around his neck remained.
A bill in the Massachusetts Legislature, sponsored by Representative Carl M. Sciortino Jr. and 21 other legislators at the urging of the nonprofit legal group Gay & Lesbian Advocates & Defenders, would require private insurers, MassHealth, and the state group insurance commission to pay for lipodystrophy treatment.
Bennett Klein, director of GLAD’s AIDS Law Project, said such a mandate is overdue.
“It is completely unacceptable that in 2014 there are people with HIV who do not leave their homes and live as recluses, who are suicidally depressed,” he said.
The Joint Committee on Financial Services last week extended a deadline to pass the lipodystrophy bill on to the full legislature, awaiting an estimate from the state’s Center for Health Information and Analysis on how much mandated coverage would add to insurance premiums in the Commonwealth.
Senator Anthony W. Petruccelli said members were moved by testimony from Wallace and other lipodystrophy patients at a recent hearing, but also heard testimony on other debilitating illnesses.
“The unfortunate reality for the committee is that we have to weigh the cost associated with added mandated benefits here in the Commonwealth,” he said.
Representative Michael A. Costello said he was persuaded by testimony about the stigma and the physical pain associated with the condition.
“It begs the question, why does insurance see this as cosmetic and not as medically necessary?” he said. “I’m inclined to move it quickly.”
Both legislators said the bill’s chances are improved by the rarity of lipodystrophy and the likelihood that the pool of patients will not increase substantially.
Graham, Wallace’s doctor, said lipodystrophy is “a legacy problem” found mostly among those given HIV treatments in the 1990s that were more toxic than later medications, and that relatively few cases exist.
“I would be stunned if it was more than 300 people” in Massachusetts, Graham said.
Organizations such as the Massachusetts Association of Health Underwriters oppose the creation of any additional state mandates at a time when health care costs are rising quickly and implementation of the federal Affordable Care Act is still underway.
Kate Bardsley, executive director of the association, argues that insurance coverage for lipodystrophy and other conditions under consideration for mandates should instead be offered to consumers through supplemental policies.
“It’s certainly not that we have a prejudice against any of them, because they’re heart-wrenching, every single one of them,” she said.
Dr. John M. Mazzullo, an assistant clinical professor of medicine at Tufts Medical Center who has treated patients with HIV since 1984, recalled his excitement two decades ago when an effective triple-combination therapy for HIV became available. He also recalls the horror he felt “a couple of years later to see these physical deformities appear” in those who were treated with the therapy.
Mazzullo said it then felt like a “triple whammy” when he learned that insurance companies often would refuse to pay for lipodystrophy treatment, calling it a cosmetic issue.
Mazzullo said that as a result, in the late 1990s some patients refused HIV treatment to avoid becoming disfigured, and he has seen others cease taking medications in hopes that their lipodystrophy would disappear. If it does, he said, “It gets replaced by AIDS wasting.”
Graham said that because lipodystrophy is so noticeable, it is especially difficult for those who prefer to keep their health status private. “Having anything that marks them as having HIV, in and of itself, is devastating,” Graham said.
Longtime AIDS activist Beth Hastie is not shy about letting people know that she is HIV positive, but prefers to do it on her own terms. “I’d rather tell people myself than have it physically show on my body,” said Hastie, 44, who contracted the virus in 1990.
From the mid-’90s until 2007 — when Hastie’s insurance provider agreed to pay for surgery to treat her lipodystrophy — those who knew about the condition could easily recognize the fat deposit on the back of Hastie’s neck, which pushed her head forward, causing two herniated discs and shooting pains down her right arm. The removal of the fat deposit changed her life.
“I felt less burdened emotionally, psychologically, and also physically — having less pain and having improved posture,” Hastie said.
It wasn’t easy to get treatment. Initially, Hastie’s insurance company denied coverage for the procedure. She then went through a months-long appeal process after gathering photos, medical records, and letters from her health care providers.
For Wallace, the formation of his lipodystrophy coincided with the deaths of his parents and his longtime partner. Though the condition has led to increasing isolation and thoughts of suicide, he says he won’t take his own life because he is Catholic, and because it would devastate his younger sister.
Instead he waits.
Wallace’s eyes filled with tears as he remembered the love of his life, Don Homer, who took Wallace on romantic trips to Florida and the Bahamas and cared for him when he became sick. Homer died of a heart attack on Feb. 4, 2003, and though Wallace still grieves, he is relieved that Homer last saw him only in the earliest stages of his lipodystrophy.
“I wouldn’t want him to see me like this,” Wallace said.
Mazzullo, the doctor, said Wallace has the most severe case of lipodystrophy he has seen, and he finds it unconscionable that Wallace should survive HIV only to be denied treatment for a disfigurement caused by his medication.
“To think that we’re allowing a survivor to — the word isn’t even ‘live’ — to exist like that, is shocking,” Mazzullo said.