A person living with the AIDS virus once had no hope of growing old. But within the next eight years, more than half of all Americans with the disease are likely to be over 50.
Rayford Kytle, in other words, could soon be a typical person living with HIV.
At 65, he is a gay man who has been HIV-positive for more than 30 years. He exercises regularly, watches what he eats and doesn’t smoke. But he also has had his hips replaced. And every 18 months, a surgeon gives him injections to compensate for fat loss in his face, he said, “so I don’t look like a walking skull.”
The hip surgeries are related to his disease. The injections, which cost about $1,500, are fillers to counteract the facial wasting that is a side effect of the early, more toxic anti-HIV drugs.
The HIV/AIDS epidemic in the United States is often perceived as something that mostly affects young adults. But nearly 11 percent of the 50,000 new infections each year are in people 50 or older. The federal Centers for Disease Control and Prevention estimates that this group makes up 33 percent of all people living with HIV — a percentage that will increase to more than 50 percent by 2020.
As HIV-infected adults live longer, they are increasingly affected by such chronic illnesses as heart disease, diabetes, kidney disease and osteoporosis, common problems among many older people.
But studies suggest that those with HIV may be at higher risk for some of those illnesses and may get them earlier than usual.
HIV causes the immune system to fight the virus, and that inflammatory state continuously damages organs, even when antiretroviral medications are taken, researchers said. HIV-infected people are more likely to have hepatitis C or hepatitis B and are much more likely to smoke than the general population.
People with HIV are living into their 50s, 60s and beyond because of highly effective antiretroviral therapies that became widely used in the mid-1990s. At the same time, experts say, some people over 50 are engaging in sexual behaviors that put them at high risk for contracting the AIDS virus, resulting in new infections.
Some older Americans have a poor understanding of their risk and don’t use condoms. Doctors also don’t do as good a job collecting sexual histories of patients 50 and older, because they consider them lower risk and fear angering or insulting them, according to a recent study in the American Journal of Public Health.
The challenges of managing as well as preventing HIV among older Americans were a major theme at the 19th International AIDS Conference in Washington this week, which closes Friday with a speech by former president Bill Clinton.
“It’s only fairly recently that we’ve come to appreciate that even in people with suppressed virus, there are continuing effects of being infected with HIV,” said Amy Justice, a professor of medicine and public health at Yale University who oversees an ongoing study on HIV and aging among veterans.
HIV does not exist in a vacuum, Justice said in one presentation. Smoking and infections such as hepatitis C contribute to the inflammation triggered by the virus. And like everyone else who is aging, older people with HIV are grappling with “the physiological burden of those things acting in concert,” she said in an interview.
Researchers are trying to tease out the connections: How much can be traced to the drugs, how much is the actual virus stimulating the immune system, how much is the virus’s impact when the person was first infected?
Someone like Kytle, who works and has private health insurance, is far better off than a 55-year-old man who has the virus and hepatitis C, high blood pressure and depression, and is overweight and experiencing erectile dysfunction — and lacks health insurance. For doctors, the tendency might be to treat the person for each of the conditions.
“They may end up on 15 medications,” she said.
For sure, people would need to take their antiretroviral medications. After that, Justice questions whether taking more drugs would do more harm than good.
Older Americans living with HIV drew plenty of attention at the conference.
In the Global Village, which is open to the public, a project called “The Graying of AIDS” installed a temporary portrait studio to allow anyone 50 and older who is aging with HIV to pose for a photograph.
In the official conference area, organizers for the session “HIV and 50+” turned away dozens of people after the 1,000 seats were filled. When panelists asked for a show of hands of those older than 50, most of the hands shot up, including Kytle’s.
Kytle grew up in the South and moved to Washington in 1980. He thinks he was infected before 1979 but knew for sure he had the virus in 1984, when tests became available.
“I was one of the first people to be tested,” he said.
The early experimental drugs helped save his life. But they also led to a cascade of side effects. In addition to the hip surgery and facial injections, he also battles depression, a side effect from an earlier drug, he said.
Until about seven or eight years ago, his entire focus was staying alive, or trying to keep his partners alive. One died in 1986, the second in 2002. Then he was treated with the better, newer drugs. The virus has been undetectable in his bloodstream for four or five years.
And his outlook has changed.
“I stopped worrying about dying. I was able to think about other things. I felt relaxed enough to do that,” he said. He’s reading, something he hadn’t had the time or energy to do since the epidemic began 30 years ago.
Like other older Americans, he is facing his own mortality.
“It scares me,” he said. “I want to make the best use of my time to be as good a person as I can be.”
At this week’s conference, Kytle had thumbed through the 409-page program book and planned out which sessions to attend. Many dealt with homophobia and the continuing stigma surrounding the disease.
On Wednesday, he went to a panel discussion about the U.S. response to the global epidemic that featured Sen. Marco Rubio (Fla.), who has been mentioned as a possible Republican vice presidential candidate.
The panel was interrupted several times by protesters.
There was no question-and-answer session, and as panelists hurried off the stage, Kytle stood up to make the point that homosexuality should not be criminalized. He shouted: “You can’t treat gay people as sick, criminal, second-class citizens and end this epidemic.”
“Homophobia kills,” he said.