When John Schumacher was diagnosed as HIV positive in 1998, he did not think that he would live to see his 50th birthday.
“It was very traumatic. At that time, I had no symptoms,” said Schumacher, who only learned about his status after applying for life insurance.
Schumacher said he lost many of his peers to the disease. “A lot of people in my age group did not make it,’” he said.
More than two decades later, Schumacher, 62, is among the first generation of HIV-positive individuals living to be over 50.
Advances in medicine, like antiretroviral treatments, have prolonged the lives of those living with HIV and reduced the risk of new infections. However they have also highlighted new gaps in care for this aging population, which often faces challenges including comorbid diseases, mental health issues and social isolation.
At Zuckerberg San Francisco General Hospital, a two-year old program in Ward 86 is aiming to bridge this gap by providing The City’s aging HIV population with comprehensive care.
The ward, one of the first dedicated HIV outpatient clinics in the nation, is staffed by UCSF and provides services to some 2,600 patients.
“It’s a holistic care program that is aimed at making people do better as they age. A lot of people, although they are surviving, have long term complications, like cardiovascular conditions, liver and kidney problems, possibly due to the medicine,” said Dr. Monica Gandhi, Ward 86’s medical director.
This year marks the first year in which half of the people living with HIV have reached the over-50 age group — a statistic that is expected to rise to 70 percent in the next decade.
Many of those now aging with HIV failed to plan for their golden years and were unable to have families that could care for them in older age, according to 71-year-old Jeff Mills, an advocate for the elderly HIV positive community who is also living with HIV.
“Being an elderly advocate, I am finding that the isolation that is out there, especially in the gay community… is rampant,” said Mills. “Finding a way for each of us to find out who we are, where we are and get together is extremely helpful.”
In San Francisco, new infections dropped to 221 in 2017 from roughly 2,000 annually when AIDS mortality reached its peak in 1992. The goal is to get to zero by 2020.
Simultaneously, the number of people living with HIV has been steadily increasing.
In 2017, the year for which the most recent data is available from the San Francisco Department of Public Health, some 3,050 people over the age of 60 were living with HIV.
“Now the challenge is what to do with people living with HIV, who are said to be more likely to get certain cancers, diabetes and heart disease,” said Schumacher, who was himself diagnosed with terminal cancer in 2017 but is now in remission. “In a sense, we are an experiment.”
With a $750,000 grant over three years from Gilead, a pharmaceutical company that develops antiviral drugs used to treat HIV, Ward 86’s Golden Compass program focuses on a holistic approach with four “points” to better serve the needs of people over 50 living with HIV.
The program was initially launched with $175,000 in funding over two years from AIDS Walk SF. Gilead has funnelled a total of $18 million in grants over the next three years into 30 organizations ranging from healthcare providers to advocacy groups working to improve the coordination of care.
The four focal points of the Golden Compass program represent the cardinal directions — north for the heart and mind, east for bones and strength, west for dental, vision and hearing, and south for “network and navigation,” said Gandhi.
To that end, Golden Compass is run by a multidisciplinary team that includes Gandhi, a registered nurse, a medical assistant, a cardiologist,a pulmonologist, and a social worker. Patients receive therapy, oncology, eye and dental services, among other things, and are referred out for specialized care.
“Changes in cognitive needs can be accelerated in HIV positive patients that have been on medication for a long time,” said registered nurse Mary Shiels, who added that Golden compass offers routine screenings, operates support groups and facilitates social connections.
According to Shiels, the Golden Compass team is currently working to expand the program’s services and reach.
“Addressing the needs of long term survivors is a new focus. We are seeing that this group will make up about half of our clinic population,” said Shiels. “We are now trying to see how we can fold in some of the services for our aging HIV positive population into regular primary care.
When Ward 86 was first established in 1983, very few lives were saved — at the height of the epidemic, patients were admitted primarily to die comfortably, according to Gandhi, who called the shift in the focus of the services offered by the clinic “innovative.”
“We never dreamed that almost 35 years later we would be starting an HIV aging program and it’s a privilege to be able to see people live so long and thrive — and that’s the purpose of the Golden Compass,” Gandhi said.
In 2010, Ward 86 became the first clinic in the world to recommend Universal Antiretroviral Treatment. While its patients credit their survival to the clinic, its leadership hopes that the services, including the Golden Compass program which currently serves about 300 patients at ZSFGH, may be replicated across the country.
“Ward 86 taught me to be proactive — to educate myself about the latest in the science that was going on at the time, the research, the nomenclature. And it armed me in a way that I was able to comfort myself,” said Mills.
Mills said that he left San Francisco for North Carolina a few years ago after he and his partner were “economically squeezed out,” and was shocked by the lack of services available there. He is now working with multiple advocacy groups to connect HIV positive seniors and to counteract lingering stigmas about the disease and homosexuality.
In San Francisco, challenges remain, including serving those who are homeless and living with HIV. The Department of Public Health is currently focusing efforts on pop up clinics, to meet this population of patients where they are at.
“We don’t require appointments for people who are homeless. We do primary care on the spot, in their time frame, however they want it,” said Gandhi.
The rate of new HIV infections is also shaped by inequities, with the risk being higher among black and Latino men.
Schumacher returns to Ward 86 about every three months and says that his experience has helped him open up about the disease.
“I honestly never felt that I’ll get to be this age but here I am,” he said, adding that he is now focused on “aging masterfully.”
“I’m still alive, I’m still going strong, and I want to show others by my example that it’s possible,” he said.