Stephen Karpiak, Pathbreaking H.I.V. Researcher, Dies at 74
His work helped change people’s attitude toward older people living with the virus that causes AIDS.,
Stephen Karpiak, whose research into the lives of New Yorkers aging with H.I.V. revealed a scarcity of support networks and high rates of depression, leading to changes in the care of older people living with the virus, died on Oct. 16 at a hospital in Manhattan. He was 74.
His brother, Michael, said the cause was kidney damage that resulted from an infection.
AIDS had a devastating impact on gay men in the 1980s, especially in New York. The advent of antiretroviral drugs in the 1990s marked the beginning of a hopeful shift, and a decade later, after an era of despair, gay life reclaimed its vibrancy in the city. But Dr. Karpiak at the time was starting to conduct research about older adults living with H.I.V. and he was troubled by what he was learning.
The landmark study launched by Dr. Karpiak interviewed 1,000 New Yorkers over 50 about their quality of life and mental health; it eventually also included San Francisco, Oakland and Chicago. The data was stark.
Dr. Karpiak learned that his subjects struggled with fragile support networks and inadequate health care, and that 70 percent of those infected by H.I.V. lived alone; this social isolation resulted in substantially higher rates of depression. His study, “Research on Older Adults With H.I.V.,” was published in 2006, and he dedicated the rest of his career to building on it.
“There was a core message that you would detect in the focus group data: ‘You abandoned us,'” Dr. Karpiak said in a 2020 interview. “They say, ‘Gee, you saved our lives, but at what cost? You gave us extended life, but at the cost of impoverishment, continued rejection, ageism, and stigma.'”
“We gave them a pill,” he added, “then said goodbye to them.”
Dr. Karpiak, who witnessed the AIDS crisis as a gay man in New York in the 1980s, became an impassioned advocate for those aging with the disease and railed against ageism.
“They encounter programs where the emphasis on prevention of H.I.V. in high-risk youth and young-adult populations often dominates,” he wrote in a 2019 article for Positively Aware magazine. “We live in a society where youth receive the highest premium. Aging is seen as a disease rather than an inevitable process of living.”
Dr. Karpiak championed his cause at the AIDS Community Research Initiative of America, where he worked as a lead researcher for years.
He built caregiving networks for older people with H.I.V., trained health care providers in treatment strategies and became a skilled fund-raiser who dealt with supporters like Donna Karan and Calvin Klein. His research was also backed by large grants from pharmaceutical giants like Gilead.
Dr. Karpiak sought to reach his research subjects directly. As executive director of the Pride Senior Network, which he joined in 1999, he ran and edited The Networker, a free quarterly newspaper aimed at older gay New Yorkers that was distributed in bars and doctors’ offices. Its inaugural issue, in 2000, featured a manifesto about age discrimination by the novelist Patricia Nell Warren.
“As Stephen grew older as a gay man himself, because he was a scientist, he couldn’t help but notice disparities around him,” said Tonya Taylor, an assistant professor at SUNY Downstate Health Sciences University in Brooklyn who was mentored by Dr. Karpiak, and studies women aging with H.I.V. “He gave visibility to this topic and brought it out from the darkness.”
Stephen Edward Karpiak Jr. was born on Aug, 13, 1947, in Hartford, Conn. His father was a fire captain. His mother, Olga (Yanenko) Karpiak, was a judicial secretary.
He graduated from the College of the Holy Cross with a degree in psychology in 1969 and earned his doctorate in experimental psychology at Fordham University in 1972. He joined Columbia University’s medical school as a researcher studying seizures and behavioral disorders.
In his 30s, Dr. Karpiak lived in the West Village and was immersed in the city’s gay nightlife. He partied until dawn at clubs like the Saint and the leather bar Ramrod, and he fell in love with a schoolteacher, who became his partner. When the AIDS crisis began, he started receiving messages on his answering machine from friends desperately seeking his medical advice. He also began attending funerals constantly.
“Losing all those people was never far from his mind,” said his brother, who is his only immediate survivor. “And it tied deeply into his personal life. He lost his lover, who was his soul mate.”
His partner’s death stirred something in him.
“When he finally saw those who survived, he saw they weren’t surviving well,” he added. “So Stephen thought, ‘How can I do something about this?’ He couldn’t do anything when it was happening in the 1980s, but then he got his chance.”
Dr. Karpiak left Columbia University in the mid-1990s and moved to Phoenix to run a clinic for people living with H.I.V. He also managed an agency there that provided housing for homeless men living with the virus.
Dr. Karpiak returned to New York in 1999 to lead the Pride Senior Network. One day at a health fair he gave out a simple questionnaire that asked: If you are older and were to suddenly fall ill, do you have someone who would care for you? After studying the responses, he undertook his research.
Dr. Karpiak joined the faculty of New York University’s College of Nursing in his 60s and later worked for G.M.H.C. (formerly Gay Men’s Health Crisis), where he founded its National Resource Center on H.I.V. and Aging.
When the coronavirus pandemic gripped New York, Dr. Karpiak grew concerned about how older people living with H.I.V. would be affected by lockdown. Sequestered in his Hell’s Kitchen apartment, he took part in web conferences with medical experts to address the topic. He always encouraged his research subjects to tune in, so they could hear that someone was looking out for them.
“The Covid-19 pandemic showed us that we are an ageist society,” Dr. Karpiak said in 2020. “We hear misinformation constantly: ‘This virus only affects old people,’ so most people, ‘don’t need to worry about it so much.'”
“I have heard many older adults say, ‘The worst thing in the world is to feel abandoned,'” he continued. “Even more unsettling is hearing from them, ‘There is something worse than AIDS, like loneliness.'”