AIDS survivors recall epidemic's early years

updated 6:06 a.m. ET June 5, 2006

In those days, a diagnosis was a death sentence. No one knew how you got it, this mysterious ailment that savaged the human body with almost medieval cruelty.

Baffled doctors threw everything they had at skin cancers, brain infections, intestinal parasites and other horrific symptoms. Nothing worked.

Twenty-five years after federal health officials first recognized the disease that would become known as Acquired Immune Deficiency Syndrome, AIDS no longer is synonymous with terminal illness.

But like other wars, the early years of the AIDS epidemic produced survivors, people whose lives bear the contours of having crossed so malignant an enemy. Cameron Siemers, Lonnie Payne and Lisa Capaldini are three of them.

Three faces of AIDS, one message for a country where more than half a million people have died: 25 years is not such a long time.

Cameron Siemers, 24, infected during a blood transfusion

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.”

msnbc.com special report Readers recall the early days For Jamie Lee Curtis, AIDS war is personal 25 years, 25 million dead and counting How AIDS changed sex in America. Or did it? Network news slow to report epidemic Don't let old fears drain the blood supply NBC Video Gallery: Track early reports Three survivors look back   Slide show: The Face of AIDS Interactive Map: Progress and setbacks Hollywood's take on AIDS Full AIDS coverage

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.

“I knew what it was and I knew what it meant, but I didn’t think of it as a death sentence,” he said.

As he’s gotten older, it’s gotten harder to hold onto his innocence. Siemers is among the minority of patients 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 gotten sicker.

He almost died two years ago after his inflamed pancreas started bleeding uncontrollably, a chronic condition associated with HIV. Recently, he was on a new drug that looked promising, but he had to stop taking it because the medication exacerbated the abdominal pain from his pancreatitis. His doctor is trying to get him enrolled in a study for another drug.

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.”

Siemers isn’t sure why he grew up thinking AIDS was something he had to conceal from all but a few trusted friends. After he revealed his secret, he felt blessed by all the support he received.

INTERACTIVE The AIDS epidemic Cases and deaths around the globe

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, diagnosed with AIDS in 1986

The same month Cameron was conceived, Lonnie Payne moved from Chicago to San Francisco with his lover, Joel Swandby.

Noah Berger / AP Lonnie Payne, diagnosed with AIDS in the 1980s, stands in front of a temporary AIDS memorial in San Francisco's Castro district on May 24. The wall, made up of photos and notes from friends of AIDS victims, marks 25 years of the disease's impact.

In April 1981, the city was “the gay Mecca of the United States,” and Payne and Swandby reveled in the freedom of living in a place where men could love other men with abandon.

Although Payne remembers hearing about a strange illness that surfaced in the gay community that year, it took time before “the rumor started getting longer” and reality set in. Once-beautiful men walked the predominantly gay Castro District 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.”

“In those days, there was this fear of being identified, so I remember not even using our real names.”

All four men 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.

“It’s hard to think back through that darkness for me at times,” Payne said. “I never thought I would be in a world without my twin brother. ... It was like everything I knew that was comfort was eroding.”

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 protease inhibitors 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 diarrhea, the neuropathy,” Payne said. “But for me, the reality is that they were working, and it changed my outlook on life.

“I started with an attitude of, 'I will try to see if I can make these drugs work because I’m really not ready to check out yet. There’s a reason why I’m alive and the other guys aren’t, and I just need to find out what it is.”

Another decade has passed. 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.

“I love the fact that we consider ourselves long-term survivors of AIDS and not people living with HIV and AIDS,” he said. “Because we are survivors, and whatever has come up we have navigated through it, sometimes with great success and sometimes with just passable success.”

MORE FROM AIDS

AIDS Section Front

Gene variant common in Africa ups HIV risk U.S. ban on visitors with HIV could end soon HIV patients living longer in developed nations Bronx wants HIV tests for all adults in borough HIV resurges in men who have sex with men Global AIDS rates up for drug users, gay men Study: Treating herpes doesn't prevent HIV U.N.: New HIV infections outpace treatment Longer drug therapy helps babies ward off AIDS South Africa wages intensified war on AIDS AIDS Section Front   Add AIDS headlines to your news reader: