25 years is not a long time

Cameron Siemers had a big secret until he was 18. When he decided to give it up, he did so in spectacular fashion, telling his entire high school graduating class that he had AIDS.
“It was hard because I knew all these people,” Siemers said of the commencement speech. “I just wanted to give them something because we were graduating… And just to get it off my chest, to let them know.”
The revelation explained why Cameron was small for his age and missed long stretches of school in a Los Angeles suburb. When friends wondered why he could never have sleepovers at their houses, he always had said he had hemophilia, which was true. That’s how he got HIV.
His doctors think Siemers got tainted blood in a transfusion when he was 3 years old, but he wasn’t diagnosed until he was 7. His mother gave him the news while they were playing Legos. “It didn’t sound like a death sentence,” he said.
As he got older, it has become harder to hold onto his innocence. Siemers is among the minority whose AIDS has proven resistant to the drug “cocktails” that changed the course of the disease. So even as treatment options have improved, he has got sicker.
He almost died two years ago after his inflamed pancreas started bleeding uncontrollably, a chronic condition associated with HIV.
Looking back, it’s easy to regret the things he hasn’t been able to do that other guys his age take for granted. Asked for an example, he doesn’t skip a beat: “Dating”.
While Siemers has contempt for infected people who conceal their HIV status from sex partners, he doesn’t think of himself as morally superior to those who acquired the virus through unprotected sex or intravenous drug use.
“I’ve met a lot of people with this disease and they range from every ethnicity and every gender and they are just people trying to get though it,” he said. “AIDS is not prejudiced. It will attack anybody.”

Lonnie Payne, 53, was diagnosed with AIDS in 1986

The same month Cameron was conceived, Lonnie Payne moved from Chicago to San Francisco with his partner Joel Swandby. In April 1981, the city was “the gay Mecca of the US,” and Payne and Swandby reveled in the freedom.
Although Payne remembers hearing about a strange illness that surfaced in the gay community that year, it took time for reality to set in. Once-beautiful men walked like living skeletons, their sunken cheeks bearing the telltale lesions of Kaposi’s sarcoma.
Not long after the first HIV tests became available, Payne, Swandby, Payne’s twin brother, Lawrence, and the brother’s partner, Timothy Bollinger, decided to get tested together, “as a family.”All four tested positive.
“In ’86, that was a death sentence. We didn’t know how long we had to live,” he said. “On one level we were like, ‘OK, we have this bug. We are going to do the right things and stay healthy.’ On the other hand, there was this fatalistic effect happening, where it was like, ’If I’m going to die, why should I worry about following some regimen?’”
The signs surfaced soon enough. Infection after infection broke through the men’s weakened immune systems and the drugs they were taking had debilitating side-effects. Those years are a blur for Payne, who was taking care of Joel while coping with his own illness. In 1994, Lawrence Payne died, followed by Bollinger in 1995. Swandby succumbed in 1996.
For reasons that remain a mystery, Lonnie Payne stayed strong long enough to benefit from a new class of drugs that hit the market around the time Swandby died. He thinks he’d be dead, too, were it not for the proteaseinhibitors that ushered in the era of so-called “cocktails.”
“They were horrible and they were nasty. The side effects were everything you have ever heard — the diarrhoea, the neuropathy… But for me, the reality is that they were working, and it changed my outlook on life”.
To look at Payne, one would never know how sick he was. He retired in 1996 from his marketing job with a telephone company and volunteers as a director for two AIDS organizations. He is 53 years old when he never expected to see 40.

Dr Lisa Capaldini, nationally recognized HIV expert

In her solo medical practice in San Fransisco’s Castro District, Lisa Capaldini sees a lot of HIV patients. She once treated Lonnie Payne’s late brother and partner. Some suffer from a sense of spiritual ennui she calls the “Lazarus phenomenon”. Well enough to know their limitations but too sick to work full-time, they are the epidemic’s walking wounded, Capaldini said.
“They are a little bit lost souls,” she said. “They may have sold a business or never finished school, because they didn’t think they would be around. Now what they are dealing with is, ‘I may live another 30 years. What does surviving this mean?’”
Capaldini first encountered HIV on a medical school fellowship in 1981. As a lesbian herself, she gravitated to the epidemic that was hitting gay men. Even as a new doctor, she became a nationally recognized expert in treating an illness with which no one was experienced.
These days the type of care she provides is different. A decade ago, her waiting room was full of people getting ready to die. “Today, I have more patients than ever, but I am spending less time with them than I ever have,” she said. The challenge today is not to get complacent about HIV. But HIV still carries a stigma. “It’s not ever going to be a chronic condition like emphysema or diabetes.”
NEW DRUG TO TACKLE HIV
• Scientists are developing a new way of tackling HIV, using a drug which blocks the assembly of the virus. US researchers working with Panacos Pharmaceuticals, which makes the drug, found it was effective in a small-scale human trial, reports New Scientist. PA-457 will now be given in combination with other HIV drugs to people whose existing treatment is failing. Experts said there was a lot of interest in PA-457, but warned it would not be available for some years.
–LISA LEFF