When Ken Williams learned last year that he had tested positive for HIV, he felt the same shock that typically accompanies such a reading. But unlike many of the HIV-positive people before him, he didn’t immediately start thinking about his funeral.
For Williams and a whole new generation of HIV survivors, the diagnosis no longer means a death sentence.
“I’d had enough education on it that I knew that I didn’t have the state of mind that, ‘Oh, I’m going to die tomorrow,’ ” said Williams, 23, of Minneapolis. “I just knew that wasn’t the case.”
He sees his doctor regularly and religiously takes his medication. “It’s hard sometimes because I never had any health issues before,” said Williams, who works for the Minnesota AIDS Project, an organization that for more than 30 years has been offering support to those with HIV.
The recent announcement by actor Charlie Sheen that he is HIV-positive has put a spotlight on what it means to live with the virus today. Sheen said that he was diagnosed four years ago but that thanks to ongoing treatment, the virus is “undetectable” in his body today, a statement supported by his doctor.
Much has changed in the world of HIV treatment since revelations that movie star Rock Hudson and sports legends Arthur Ashe and Magic Johnson had been infected with the virus.
Johnson, who was just 32 when he made his announcement in 1991, has reached a major milestone: living and thriving after more than 20 years with HIV.
“We’re on the cutting edge of figuring out what does it mean to be aging with HIV,” said Matt Toburen, public policy director for the Minnesota AIDS Project.
More than 1.2 million Americans — including about 8,000 Minnesotans — are HIV-positive, according to the most recent federal and state health statistics.
Back in the early days of the Minnesota AIDS Project, staffers would light candles for every client who died. Toburen remembers a time when they were lighting six candles a week.
Better drugs, fewer side effects
At the Positive Care Center in Minneapolis, the state’s largest HIV-positive and infectious disease care clinic, Dr. Keith Henry has been treating patients with HIV since the 1980s.
“In 1981 when AIDS was first described, they didn’t know what caused it,” Henry explained. “Then they discovered the HIV virus, but then they weren’t sure how they could ever treat it. There were essentially no anti-viral drugs available. So the whole field was in its total infancy.”
In those days, HIV patients and their doctors believed their illness was terminal. Little was known about how the virus was transmitted or how to contain it.
But when medical advances came, they came quickly.
“We watched this amazing progression of drug development,” Henry said. The breakthrough year was 1996. “We learned that if we could use up to three drugs simultaneously we could kind of trap the virus so it couldn’t escape and develop drug resistance. So you could keep the virus in check.”
The medications showed promise, but they produced a lot of side effects. After nearly 20 more years of further advancement, the drugs are getting safer and simpler, Henry said.
“For someone who is caught particularly early, the projected life expectancy is getting closer to those without HIV,” he said.
Still unknown is what the health picture will be for those with HIV as they grow old. “We won’t know for 30 years how the people living with HIV in the U.S. are doing,” Henry said.
The Aliveness Project is a Minneapolis nonprofit organization providing testing, counseling, meals and other support services for people with HIV. Long-term survivor Randy Hornstine volunteers there and has been a living witness to the changing HIV landscape.
“I still see people who are newly diagnosed, and the fear in their eyes is still there, but it’s a different world,” he said. “It’s truly a manageable disease.”
Hornstine, 59, tested positive for HIV in the 1980s and developed AIDS. His partner died in 1986, and Hornstine said he felt that he wouldn’t survive much longer. But his partner had other plans.
“He said to me that ‘When I get to the other side, I’m going to make sure you’re not going to die of AIDS. You’re going to die of old age,’ ” recalled Hornstine, who also has survived cancer.
While the survival rate has improved for those with HIV, the stigma associated with having the virus remains strong.
Williams said that the perception about what it means to be HIV-positive varies from person to person and community to community.
“For me, I’m black. In our realm, it’s still very taboo,” he said. “There are still a lot of misconceptions about it.”
Since learning his status last year, he said he’s learned to accept it and has opened up to his family and friends.
The ongoing stigma hampers AIDS prevention efforts because it often deters people from getting tested, Williams said.
“They think, ‘If I go and get tested, then I’ll find out about it, and then I’ll have to deal with telling people,’ ” he said.