By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
By Anna Merlan
By Lee Escobedo
Protease inhibitors were initially so effective, it seemed as though an entire generation of AIDS patients were suddenly resurrected. "They would go from cadavers to looking like normal human beings," says Dr. Stacy Broun, a Dallas clinical psychologist who has worked with AIDS patients since the onset of the epidemic. "A lot of my patients, who were told they were going to die, had spent everything and gone on these wonderful cruises and vacations. Suddenly they were told they were going to live. They had no plans for the future. Life didn't hold out a lot for them." She counseled many patients who were depressed, even suicidal, others who felt guilty that they had survived their lovers and friends. "The good news was, they were going to live," she says. "The bad news was, the drugs might make them feel like crap."
Over time, the use of protease inhibitors became associated with a bizarre side effect called lipodystrophy syndrome. Patients reported odd accumulations of fat behind the neck (buffalo hump), around the abdomen (protease pouch) and on the chest (breast enlargement). "I looked like I was pregnant," Shaffer says. "I had a thick ring of fat around my neck and a double chin, but my legs looked thin, like a runner."
"We don't know what causes it, whether it's the drugs or the disease or a combination," says Dr. Dolores Peterson, an HIV researcher at UT Southwestern Medical School who has studied the syndrome. "We do know that between 20 to 50 percent of patients experience some form of the syndrome after they have been on HAART treatment for as many as five years. That is when we get the highest numbers."
Shaffer says he lost the excess fat after he developed a resistance to Norvir and discontinued its use. Every two years or so, despite his austere regimen, his virus multiplies and mutates. The new resistant strain must be beaten back with a different HAART cocktail. "Even if completely adherent, people who started on meds when AZT was all there was tend to develop resistances quickly," Dr. Peterson says. "In the old days, we didn't do combinations, and then the combinations we did do weren't powerful enough to suppress the virus completely. Those people still have it rough."
Shaffer has no job, no health insurance and no money. The Texas HIV Medication Program pays for his cocktails, which would otherwise cost him an estimated $16,000 a year. Despite his morphine-numbed neuropathy and a hip replacement that still causes him severe pain, he has no choice but to stand in long lines and wait: for food at the AIDS pantry, for medical care at Parkland Memorial Hospital's Amelia Court Clinic, for his medications at the county's outpatient pharmacy. It's the life of a subsidized AIDS patient--someone who is fearful that an overwhelmed bureaucracy is out to screw him, someone who is fighting for a future that seems out of his control. "I am just one step away from being hungry, homeless and having the lights turned off."
To Shaffer, complacency isn't about having unprotected sex, it's about people who wrongly believe the AIDS crisis is over, who have no clue that 15 people a month die an AIDS-related death in Dallas County alone. It's about AIDS agencies lacking funding because of a perceived lack of urgency and a 9-11 mentality that makes people too uncertain about their own future to be charitable to someone else's. It's about a budget-cutting Texas Legislature that last session tried and failed to reduce the rolls of HIV patients eligible for free medication, and will no doubt try again. And it's about an indigent health-care system that has told Neal Shaffer that he has run out of free pharmaceutical options if his medications fail him again.
And they will.
Boys at Play
At 24, Barry Warner's only exposure to the AIDS epidemic was watching the movie Philadelphia. He was too young to know anyone who had died one of those horrible AIDS deaths. His friends were gay, and they never talked about AIDS, never seemed to worry they might catch it. And if they did, so what? There were pills you could take, the next best thing to a cure. But that was nothing that concerned him, not until July when he learned he was infected with the virus.
His laissez-faire attitude toward the illness was several years in the making. After he came out at 18, he immediately left home and moved in with Jon, an older man who insisted on wearing condoms if he insisted on sex at all. Jon blamed his low sex drive on Warner, claiming Warner was "fat and unattractive" despite his classic good looks. Living with Jon wasn't easy, but neither was living with his adoptive parents, who wanted "the perfect child," says Warner, and instead "got a gay, alcoholic, drug-addicted one."
For three years, Warner remained monogamous, although Jon held no similar compunction, which might account for why he acted so "responsibly." The day Jon told him to leave, Jon had another lover in waiting. Warner was devastated and escaped to New Mexico, where he delivered pizza and got stoned simultaneously. "It was the best job I ever had," he says.