The Human Face Of AIDS

Steve Miller, who has AIDS, fielded close to 30 tough questions in less than an hour on Jan. 27, among them: "Did you feel like committing suicide when you found out?" "How long do you have to live?" "Did you consider yourself sexually promiscuous?"

Answering each with the kind of forthrightness that comes from staring death in the face, Mr. Miller encouraged his audience - an East Hampton High School health class, evenly divided between boys and girls - to ask more.

They did. They, and about 100 others last week, in five of James Stewart's health classes where Mr. Miller was invited to speak.

Making It Personal

"I want to put a person - a name and a voice - to this disease," Mr. Miller said, explaining why he subjected himself to the inquisition. "I graduated from this school in 1974," said the 42-year-old, who was diagnosed with full-blown AIDS six years ago. "I want to give something back."

His main message: "When you meet someone you think is handsome, or pretty, and you want to 'do the nasty,' make sure you use a condom." Kids, he reminded a reporter earlier, tend to "separate the sex act from its ramifications."

"I got AIDS from unsafe, unprotected sex," acknowledged Mr. Miller, who for six years owned Pinstripes, an East Hampton clothing shop.

Medications

"I had a T-cell count of 97 when I was diagnosed," two weeks after being tested, suffering from pneumonia, and near death. In healthy people, T-cells, which provide immunity from infection, range from 800 to 1,200, he said. "I went from [having] a wall of immunity to a little picket fence."

Holding up a plastic bag packed with bottles of medicine, Mr. Miller, who receives $598 a month from Social Security Disablity, said he must swallow 16 different pills and capsules daily at varying intervals - some with food, some without.

At $1,500 to $2,000 a month, they include the new and expensive protease inhibitors. It is an expense New York State - but not all states - picks up under a special AIDS drug assistance program.

Mr. Miller has all but stopped working, caught in what he called a "catch-22." If he works, he loses his benefits, including Medicare, the Federal health insurance disabled Americans receive, and is unlikely to get private insurance, which could cost $10,000 to $15,000 a year.

Unemployed, he is confined to the minimal monthly disability stipend. Fortunately, he said, he lives in the house his late parents owned on Sherrill Road, East Hampton.

Ironically, Mr. Miller said, he also worries about losing his disability support if his "T-cell count goes up too high," in seeming, though probably temporary, good health.

Sly And Sneaky

Open about his homosexuality, Mr. Miller stressed that the highest rate of H.I.V. infection now is among women aged 16 to 25, and what he called "senior citizens over 55 who are now single and don't think about it."

use a condom, and practice safe sex," he repeated, and repeated. The $24,000 a year spent on his medicine," he told the students, who listened intently, "that's a nice car."

"Do they [the medicines] make you nauseous?" asked one. "Sometimes in the morning, but I do get diarrhea," was the answer. The protease inhibitors are "very toxic," designed to "eat" protease, the portion of healthy cells the H.I.V. virus depends on to replicate. That virus, he added, "hides in the lymph nodes and the brain before bursting out in the T-cells."

"It's sly, and sneaky, and it keeps mutating."

Not Suicide

More answers. "There's no way to tell" how long he has to live. "Some go fast, though I could live to 85."

How did he feel when he found out?

"I thought, 'I'm going to be dead in two years.'" But suicide?

"No," he declared, because he had the solid support of his family.

"Do you still engage in normal acts?

"Sexually?" asked Mr. Miller, just checking.

"Yeah."

"No. When you tell someone you're 'positive,' they often hit the road."

"Were you promiscuous?"

"Yes."

Mr. Miller, who by all appearances these days passes for healthy, reminded the class, "You wouldn't know I was sick by looking at me."

AIDS Advisory Committee

The Star attended the class with the understanding that students' comments would be reported anonymously. Afterwards, several said their parents had discussed "the disease in general," though not necessarily their children's behavior.

They were "aware" of the things Mr. Miller talked about, but added that it was good to hear about it directly.

"Each class has different questions," said Mr. Stewart, who, with Mr. Miller, has been named to a newly formed AIDS Advisory Committee scheduled to hold its second meeting on Feb. 26 in the high school library.

The public has been invited to attend, as the committee reviews a revised kindergarten through 12th-grade health curriculum.