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Cecilia Chung never expected to live past 30. Diagnosed with HIV in 1993 when she was 28 years old and just beginning her gender transition, Chung was told she had six months to a year to get her affairs in order.
“The thought of growing old never crossed my mind,” she says. “It was just about survival.”
Now 56, Chung, of San Francisco, is among the so-called silver tsunami of people aging with HIV. As of 2018, more than 50 percent of the estimated 1.2 million people living with HIV in the United States were 50 or older. Many are long-term survivors who, like Chung, were diagnosed with HIV before the first effective treatment regimens became widely available in the mid-1990s.
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Despite medical advances that now allow people to live with HIV for decades after diagnosis, long-term survivors say they continue to face mental, physical and financial challenges as they grow older with a virus they never expected to survive in the first place.
Leading a ‘life of isolation’
“Death has been a part of my life every day for the last 40 years,” says Paul Aguilar, 58, who was diagnosed with HIV in 1988 at age 25.
Aguilar, who has now been living with HIV for more than half his life, had to cope with his own diagnosis (he was told he had five years to live) as he was witnessing the devastating toll of the AIDS epidemic, which ravaged friend groups and communities in cities like his native San Francisco.
He lost his first friend to AIDS, the disease caused by the human immunodeficiency virus or HIV, in August 1981, just a few months after the CDC released its initial report about a rare lung infection — a complication of AIDS — found among previously healthy young men. The deaths of those close to him haven’t stopped since, he says.
“When you are the sole survivor of your entire social circle … it takes its toll emotionally, mentally, spiritually,” he says. “It’s a life of isolation, when you’ve seen the devastation that we have.”
Long-term survivors like Aguilar are vulnerable to AIDS Survivor Syndrome, a PTSD-like condition that stems from living through the trauma of the AIDS epidemic and can cause symptoms such as depression, anxiety, low self-esteem and social withdrawal.