Remembering Stephen Karpiak

Dr. Stephen Karpiak, an irreplaceable pioneer in the HIV and aging field, died on Oct. 16. He was 74.

Karpiak was GMHC’s senior director for research and evaluation and the founding director of its National Resource Center on HIV and Aging, the first-ever comprehensive website repository for HIV and aging research.

He is remembered by his colleagues as a brilliant and visionary research scientist, a tenacious and resourceful community advocate, and a caring, supportive mentor.

“Steve was a leader, a giant, in the area of HIV and aging, and was doing the work long before many people even had it on their radar,” Positively Aware editor Jeff Berry said in a remembrance, adding that Karpiak “was fiercely committed to making a difference for people aging with HIV.”

His death prompted an outpouring of remembrances on Twitter and other social media. “His work in the field was revolutionary and he will be sorely missed,” said SAGE, the national advocacy and service organization for LGBT elders. The UC San Diego HIV Institute called Karpiak “a true hero at the intersection of HIV and aging.”

Karpiak mentored doctors, academics, and activists alike in the emergent HIV and aging field. “His work, life and tireless advocacy inspired many—in many ways he is the reason I am in the field of aging,” said Dr. Maile Young Karris of UC San Diego, who cares for people living with HIV.

Karpiak was “a true HIV pioneer and a treasured friend” and “the kindest, wisest voice in any room,” said Tez Anderson, an HIV long-term survivor and activist who founded Let’s Kick ASS-AIDS Survivor Syndrome, in an online remembrance.

“Dr. Karpiak was an amazing mentor. I feel so honored and blessed to have been his mentee,” said Professor Tonya Taylor of SUNY Downstate College of Medicine. At GMHC’s annual Webinar on HIV and Aging on Sept. 14, organized by Karpiak, Taylor presented on the innovative Golden Compass care model for people aging with HIV, which she’s introducing to SUNY Downstate.

Karpiak was a seminal figure in HIV and aging research and advocacy—but it was actually his second career.

A neurobiologist by training, he spent 25 years as a research scientist at Columbia University Medical School, with appointments in neurology and psychiatry. At Columbia, he earned recognition for his research into seizure and behavioral disorders on how the brain adapts and repairs after injury and stroke.

He was not yet 50 when he left academia to embark on his next act to do work that was more community oriented. He became the director of AIDS Project Arizona’s Being Alive Program in 1995, where he launched a Wellness Center for HIV, and then became executive director of “A Place Called Home,” which provided congregate housing for homeless people living with HIV.

Karpiak returned to his native New York City in 1999 to lead Pride Senior Network, a research and advocacy effort for LGBTQ seniors.

By then, Karpiak saw that the future of HIV research and treatment was for people aging with HIV, he told GMHC At a Glance in September. “I just cast my fate with that,” he said.

At that time, only about 20% of people living with HIV were age 50 and older, but now that demographic makes up over half of those living with HIV—and that’s expected to reach 70% by 2030.

In 2002, Karpiak joined the AIDS Community Resource Initiative of America (ACRIA) to supervise their clinical trials team for HIV drugs and initiate a research program on HIV and aging. His groundbreaking study of 1,000 New Yorkers over 50 with HIV, published in 2006 as “Research on Older Adults With HIV” (ROAH), put HIV and aging on the map nationally and internationally.

The ROAH findings established the need for new HIV treatment and care policies, because people aging with HIV develop chronic, age-related illnesses at earlier ages than the general populace and, as a group, suffer from high rates of social isolation and unmanaged depression.

Karpiak tirelessly advocated for policies to improve the quality of life for this population, as in this recent, characteristically incisive, NRCHA article, “Long-Term Survivors Unprepared for Aging.”

He received a special recognition award from the US Surgeon General for his work, which prompted the establishment of an HIV and Aging Awareness Day, the White House Conference on HIV and Aging and a U.S. Senate hearing.

“Rarely would I say that someone is irreplaceable on the topic of older adults living with HIV/AIDS but Steve certainly comes close,” said Dick Havlik, his colleague of 20 years at ACRIA, then GMHC.

“I will miss his text messages and phone calls at odd times to discuss an idea or ask a question that he had on a certain topic,” Havlik added, noting Karpiak’s “command of the literature on older adults living with HIV/AIDS.”

Every morning, Karpiak told the International AIDS Society in 2010, “I read and read and read more, making certain that I am on top of the scientific literature, epidemiological data and media attention.”

Karpiak launched the NRCHA website in 2017, after ACRIA became a part of GMHC, to make the literature on HIV and aging widely available. “It’s up to us to ensure his work is not forgotten,” said his GMHC colleague, Meredith Nicholson, NRCHA’s research coordinator.

Other GMHC colleagues spoke of Karpiak’s dedication and kindness. “Stephen never made me feel small and he was so giving,” said peer educator Victoria Graves Cade.

Peer educator Denise Drayton said Karpiak “fought for the rights of people like myself—older adults with HIV. He was warm and kind, with a great sense of humor. Although he had great knowledge, he still was open and accessible to learning from whoever he met.”

A virtual memorial service is planned for Nov. 21 from 1:00 to 2:30 pm EST. Please join us. The Zoom link and pass code can be found in this remembrance piece by Tez Anderson.

Jacquelyn Martin/Associated Press

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