When Will Davis’s license was suspended because of unpaid speeding tickets in three states, he contacted the Pittsburgh AIDS Task Force (PATF) in the hope that he could be paired with a volunteer “buddy” who could drive him where he needed to go, like doctors’ appointments.
“I didn’t want to be isolated,” Davis says. “I just wanted to get out sometimes.”
But when Davis was assigned Carol Snodgrass as his buddy nearly two years ago, he got far more than a chauffeur. While they might not appear to have much in common—Davis is a 50-year-old, HIV-positive Black heterosexual man, while Snodgrass is a 76-year-old, HIV-negative white lesbian—they have become true buddies, despite a rocky start.
Davis learned he had HIV in 2000. Two years later, he left his native North Carolina to study graphic design at the Art Institute of Pittsburgh. He had family—an aunt, three brothers and cousins in New Castle, Pennsylvania, a town about 50 miles northwest of Pittsburgh—but that was too far for impromptu get-togethers, especially after Davis lost his license. Alone and isolated, he ended up dropping out of the Art Institute and going on disability (Davis also has diabetes, which necessitated the amputation of a toe).
When he first met Snodgrass, who worked as a psychotherapist before she retired, Davis was living in an apartment complex for people with HIV. Everyone who lived there was battling drug and/or alcohol issues, Snodgrass says.
The two didn’t hit it off right away.
“He’s an alcoholic, and he was a sloppy-drunk alcoholic,” she recalls. “We almost didn’t make it. The first six weeks we kept trying to meet, he showed up drunk.”
Snodgrass wouldn’t stand for Davis’s behavior. “You almost lost me,” she later told him.
But Davis finally decided to quit drinking on Mother’s Day 2015 to honor his mother, Snodgrass says. And a few months after he stopped drinking, in September 2015, he transitioned out of the apartment complex and moved into Section 8 (low-income, subsidized) housing.
“I would say that Will was at a crossroads in his life,” Snodgrass says. “He might not articulate that. I just sort of piece things together because he’s not a big talker. But we do talk a lot because I’m a talker.”
It may be surprising to learn that these buddy programs still exist. In the early years of the epidemic, buddies were specially trained volunteers who provided emotional support and help with daily tasks to people with AIDS at the end of their lives. Snodgrass’s first buddy, back in 1988, died of AIDS-related complications less than three weeks after their first meeting.
With the introduction of effective antiretroviral therapy in the late ’90s, most people living with HIV stopped dying of AIDS-related causes. At the time, Jeff Rindler, then a Gay Men’s Health Crisis (GMHC) staff member, frequently heard buddies say, “I haven’t seen my client this month. He’s busier than I am.” Demand for buddies and funds for training them dried up, so groups such as GHMC and PATF turned their attention elsewhere.
But AIDS service organizations and activists came to recognize that the need for buddies, perhaps not as great as it once was, never completely disappeared.
So in 2015, GMHC revived its buddy program, aimed mainly at long-term survivors who’d grown increasingly isolated. And PATF, whose contingent of buddies for the longest time had consisted only of Snodgrass and one other person, trained a handful of new buddies in January 2016.
“There still is a need for [buddies], but the actual need has changed,” says Rindler, who is now the director of the Hudson Valley LGBTQ Community Center in Kingston, New York. “It’s no longer holding the hand of someone dying with AIDS. It may be steering someone living with the virus to feel empowered enough to find a job.”
Rindler was the director of the GMHC volunteer program when the organization stopped pairing clients with buddies in 2005. “At the time, it was the right decision because it allowed us at GMHC to focus on what were becoming greater needs for our clients, such as workforce development.”
But three years ago, after Sean McKenna, a GMHC client, articulated the need for buddies to support long-term survivors, GMHC decided to relaunch the program.
“I’m blessed with a family, and I’m blessed with friends,” says McKenna, 54, who was diagnosed with AIDS in 1994, but probably contracted HIV in the early 1980s. “I’m able to get by.”
But many long-term survivors, whom McKenna defines as people diagnosed before 1996, when effective HIV treatment first became available, are not as fortunate, he says. Some long-term survivors, lonely and exhausted from contending with health problems such as heart disease and arthritis years before their HIV-negative peers, give up and stop taking their HIV medications, McKenna says.
“For people to quit taking their meds, they have to be pretty depressed and isolated,” he says. “If you don’t have anyone in your life, it’s easier to succumb to that. Loneliness alone will kill you.”
“These are people who had reconciled themselves to dying,” says Rindler. They might have gone on disability and never returned to work, and they spend most days at home alone, interacting with others only through social media.”
That isolation might help explain why the supply of newly trained buddies at GMHC has thus far exceeded the demand, Rindler says, adding that buddies supplement but can’t replace other services for people with HIV. “A buddy is one of the spokes in the wheel. It’s not the wheel. We always wanted to make sure that people were not just relying on their buddy.”
Rindler hopes to launch a buddy program at the Hudson Valley LGBTQ Community Center for older clients, regardless of HIV status, because, he says, they’re less likely to be in a relationship than younger LGBTQ individuals.
About one in six of the individuals served by the “friendly visitor” program at Services & Advocacy for GLBT Elders (SAGE) are HIV positive, says Tom Weber, director of care management services at the New York–based organization. “Most of them have other kinds of health issues now too.” Until he left in 2003, Weber headed the GMHC buddy program.
The SAGE clients who are paired with a friendly visitor, whose role is to combat isolation, are in their 60s to their 90s and, typically, stuck in their homes or, at least, in their neighborhoods, Weber says. “If somebody is walking around and going to senior centers, we don’t give them a friendly visitor.”
Some of the same issues—loneliness, stigma—saddle people newly diagnosed with HIV as well as older individuals diagnosed decades ago, says Theodore “Ted” Kerr, a Brooklyn-based organizer and writer.
“I’m from a generation of folks who grew up long after people were recovering from HIV,” Kerr, 38, says. “We knew HIV was around, but there didn’t seem to be a community response anymore.”
Kerr is part of a collective that’s looking at the concept of an HIV doula as a community response for those who are newly diagnosed. The term doula—from the modern Greek word for maidservant—is typically associated with childbirth and refers to a trained professional who provides physical, emotional and informational support to a woman before, during and after labor and delivery. Similarly, HIV doulas would provide support to individuals newly diagnosed with HIV. “For some people, the crisis never ended,” he says. “There’s always been a fear of testing or a mistrust of the medical environment.” HIV doulas could help individuals adjust to life with HIV and provide support.
Anitra Branch recognized the need for buddies firsthand when she started working for PATF as a medical case manager in rural counties near Pittsburgh. Many of her clients lacked the support of family, either because they lived too far away or they felt uncomfortable talking about HIV with their relatives, Branch says. “I just felt like they really needed some other folks to interact with.”
When she accepted the community relations manager position at PATF last June, Branch says, “my intention was to invest significant time and energy in the [buddy] program, based on the need for support I witnessed working directly with HIV-positive clients.
“There aren’t a ton of people who need buddies, which is a good thing, but for those who do, I really want to make connections. A lot of the folks [like Will Davis] whom I’ve gotten requests from have been positive for a while,” Branch says.
Davis and his buddy, Snodgrass, frequently touch base by phone and typically see each other once a week. “We go to movies, to Walmart,” says Davis, who takes advantage of free movie passes distributed by the Shepherd Wellness Community, a community center for people with HIV. “She takes me to the food bank. I tell her she doesn’t have to, but she does.” He’s also gotten to know Snodgrass’s partner of 33 years.
“He’s reluctant to ask for anything, but I keep telling him, ‘This is why I’m here,’” Snodgrass says. She was upset when Davis once took a bus to a hospital emergency department because of his diabetes instead of calling her. He didn’t want to bother her because he knew her partner was a patient at another hospital at the time. “Did it cross your mind that you could call me?” Snodgrass chided him and drove to the emergency department to wait with him until he could go home. She didn’t want him to have to call a cab.
“I would call him my friend if he weren’t my buddy,” Snodgrass says.
To celebrate his 50th birthday last June, she broke a buddy program rule—“we’re not allowed to spend money on them”—and took Davis out to eat five times, once for each decade of his life.
“I’m like his mother, and I’m like a best friend who can be relied on,” Snodgrass says. “He just looks to me for stability.”
Davis watches his health and takes his medication as prescribed, which, research suggests, is a benefit of having someone like Snodgrass in his life.
Although it’s not the case for Davis and Snodgrass, there are also advantages to pairing HIV-positive individuals with HIV-positive buddies, says Katie Mosack, an associate professor of psychology who heads up the Patient Advocacy and Research Lab at the University of Wisconsin–Milwaukee.
“Many of the people I have talked with over the years have mentioned how stressful it can be when they are called on to educate those within their own social networks about the disease and treatment regimens,” says Mosack, whose research has focused on African Americans with HIV. “They just don’t want to be put in that role time and time again, so it would be refreshing to be able to talk to someone about HIV without having to educate them.”
On top of that, she says, there’s still “an alarming amount of stigma” tied to HIV. In her studies, “people have described how family members have asked them to use special dishes that no one else in the family uses or how some people make a big deal about having to disinfect the bathroom after it was used by their HIV-positive loved one.” Having an HIV-positive buddy can help ease the stress that stems from dealing with uninformed friends or family members, Mosack says.
Clearly, providing hands-on assistance, such as picking up and administering medications, isn’t the only way buddies, HIV-positive or not, help people with HIV lead more healthful lives, says Amy Knowlton, an associate professor in the department of health, behavior and society at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “More often than not, it’s the effect that they have on maintaining routines, helping them to feel that someone cares for them and loves them.”
These caregivers aren’t health professionals, and they usually don’t even consider themselves to be caregivers, which is probably just as well, says Knowlton, because many people who might benefit from this kind of support associate the need for caregiving with being helpless, which they are not. Regardless of what you call them—buddies, friendly visitors or HIV doulas—the one thing they have in common is that they all meet people with HIV where they are, figuratively and literally.
And that’s why many of the people Knowlton has studied say, “My buddy is the reason I’m still here.”
Click here for a Q&A with long-term survivor Sean McKenna.