When asked to start a support group for gay black men living with HIV, or human immunodeficiency virus, Larry Scott-Walker said no thanks. His friend raised the question in 2015, and by that point, the 35-year-old HIV program manager had accumulated over a decade’s worth of experience working in the HIV field, first in Baltimore and then in Atlanta, often leading such support groups.
“They were just, like, really sad,” he explains. People would come to the groups to unpack each week’s traumas. There was healing in the process, says Scott-Walker, but the groups rarely moved forward from it. The most recent group had dissolved due to lack of interest, including his own.
Scott-Walker was himself living with HIV, but he hadn’t disclosed his status widely. At around the same time the group fell apart, he learned a family member was ill with complications of HIV infection. Something clicked; if he had been more open about his diagnosis, he thought, maybe his relative would have been encouraged to take her medications.
He decided he’d run the support group — but this time, it would be different. Rather than arranging for members to sit quietly in a circle, Scott-Walker and his friends planned a different kind of event. “We called it a ‘BYOB meetup,'” he says. Participants met for brunch.
That first event, which drew 45 black gay men living with HIV — one who brought a Margaritaville drink blender — grew into Transforming HIV Resentment Into Victories Everlasting Support Services, or Thrive SS, a peer support network that now has more than 3,500 members nationwide, 940 of them based in Atlanta, where the group was founded. Nationwide, 57% of black gay men living with HIV are virally suppressed, indicating they have no risk of transmitting the virus. Of the 300-odd Thrive SS members who responded to a 2018 engagement survey, 92% reported viral suppression.
Scott-Walker, now 40, attributes the group’s success to its ability to draw members with a powerful sense of belonging and to maintain an environment where positive messaging about medication adherence unfolds organically. But that environment relies on an administrative and programming style that doesn’t conform to the requirements of most federal grants, which provide billions of dollars’ worth of support to HIV programs worldwide. In fact, Thrive SS’s leadership credits the organization’s success to a conscious decision to forgo federal funding and the requirements it entails, relying instead on foundation and pharmaceutical grants, as well as individual donors.
“An organization doesn’t become worse off, per se, by taking additional funding,” says Ace Robinson, director of strategic partnerships at NMAC, an organization that advocates for racial equity in HIV advocacy and outcomes. But for growing organizations, it can be such a struggle to meet the administrative requirements of some funders that in trying to do so, they compromise their mission, he says.
Organizations may be particularly protective of their mission when it involves communities that have historically gone unreached or ignored by the federal government. “We’re that ‘for us, by us’ grassroots kind of movement,” says Scott-Walker. In other words, because the organization is run by gay black men, he says, it’s better than other organizations at knowing what gay black men need, and delivering it the way they need it. “That’s what sets us apart,” he says.
Mentoring and coaching
Peer support can be provided by a range of individuals whose roles may overlap — from trained community health workers associated with the medical care system to peer mentors, navigators, or coaches who use both training and shared experience to offer support and ensure patients get the treatment and services they need.
Viewed as a complement to primary care, peer support in the form of group or individual meetings, as well as phone calls and online communication, has long been used to help patients with chronic diseases like diabetes manage their health. But it has been slower to catch on in HIV, says Edwin Fisher, who directs the Peers for Progress program at the University of North Carolina at Chapel Hill, in part due to varying tolerance for error across different diseases in the American medical system. Diabetes patients often experience moderate fluctuations in weight and blood sugar, Fisher says, and inaccurate advice from a peer on a diet choice can usually be addressed without issue. Having a patient go off their medication and have unprotected sex, on the other hand, could potentially transmit the infection and lead to bad health outcomes for more than one individual.
Over the past 25 years, biomedical developments have dramatically advanced the diagnosis and treatment of HIV, turning what was once essentially a death sentence into a manageable disease. With early diagnosis and adherence to a simple, daily medication regimen, people with HIV can live as long as anyone else and have no risk of transmission. Still, an estimated half ofAmericans living with HIV — including those who are undiagnosed — are not receiving continuous care, and new diagnoses are concentrated among gay and bisexual men of color, who are also at higher risk for poverty, low access to education, and unemployment.
To HIV experts, that suggests there’s a long way to go in addressing the social factors that make people hard to reach with diagnosis and treatment — and that’s the sweet spot for peer support programs. Serena Rajabiun, an assistant professor at the University of Massachusetts, Lowell and a researcher with the Center for Innovation in Social Work and Health at Boston University, says peers’ most important work is in helping people overcome HIV stigma and connecting them with resources that stabilize their lives, like supportive health care providers, safe housing, and treatment for mental health and substance abuse.
When those services are needed by black gay men, organizations like THRIVE SS may be best positioned to deliver them. “The CDC may say, ‘Oh, black gay men are hard to find,'” says Scott-Walker. “But for us, it’s easy.”
Administrative burdens of federal funding
Peer support programs described in the scientific literature are often affiliated with AIDS service organizations, which usually offer HIV counseling and testing. Many of these are funded by grants from the U.S. Centers for Disease Control and Prevention (CDC) and the $2.3 billion Ryan White HIV/AIDS Program, which operates within the U.S. Department of Health & Human Services. When they apply for federal funds, AIDS service organizations are generally expected to describe specific outcome measures for which they plan to collect and report data back on an annual basis.
The choice of outcome measures influences what a given program looks like. For example, if a peer program affiliated with a clinic chooses to measure the number of clients who have two sets of HIV-related lab tests per year, its peers might be tasked with making reminder calls to clients, connecting them with Lyft or Uber vouchers to get them to lab appointments, and holding the hands of squeamish clients while they get their blood drawn. Those peers would also need to document each activity as part of the organization’s regular reporting on its grant-funded activities, resulting in a significant administrative burden.
The Ryan White Program, enacted in 1990, is a major source of funding for HIV/AIDS care in the U.S. But some say the administrative burden its dollars come with is too much.
Despite that, organizations funded by the Ryan White program are limited to spending only 10% of federal grant money on administrative activities — and are provided with little workforce training to assist with the process, says Venton Hill-Jones, chief executive officer of the nonprofit Southern Black Policy and Advocacy Network.
“It is very hard for community-based organizations to be competitive with Ryan White funding because of the burden of applying, reporting, and all those different things,” he says. CDC funds do not come with an administrative cap, although a representative says budgets are reviewed to ensure funds for administrative activities are “in alignment with the activities proposed.”
Thrive SS does not require this administrative burden of its five full-time employees or its membership. To explain the benefits of the flexibility this allows them, Scott-Walker tells a story about a post on one of the group’s Facebook pages earlier that day, a “pill check” reminder. These posts are usually accompanied by an attention-grabbing meme or a photo of an attractive man, but this one included a photo of a painting made by a member and a story about losing his partner to complications of AIDS. It provoked an outpouring of other stories of love and loss.
Scott-Walker says the fellowship and sense of purpose generated by that post defy traditional grant-writing variables, which tend to be “reflective of ‘HIV, Inc.,'” as he has dubbed the distant establishment that holds most of the HIV purse strings. He gives his head a bureaucratic waggle as he improvises an HIV Inc.-friendly metric: “‘Improve self-efficacy as it relates to talking about HIV or related to delivering adherence messaging’ — but it’s the stuff that’s not written into the grant that’s really magic. You can’t anticipate, ‘Well, by 6/20/2019, a person will post in the group that they lost a partner and that will create a buzz.'”
Scott-Walker and his colleagues “have heard about legacy agencies in their earlier years feeling different and looking different,” he says. “Now, they have federal funding and it’s just like, oh, I remember when we could do x,” he says, where x is something like the cheeky “I Thrive Because I Swallow” campaign, which depicts older black men in the act of joyfully taking HIV medications — or like a Margaritaville blender.
While federally funded programs have restrictions on using funds to provide alcohol at events, Thrive SS does not. This makes a big difference in the attendance and ambiance at their events, says Scott-Walker. While other programs’ festivities feel like 10-year-olds’ birthday parties, Scott-Walker says, Thrive SS occasionally serves alcohol in moderation at its gatherings. Although the point is not to have members get drunk, they are adults, he says: “These people don’t want juice.”
Located in the Greater Atlanta city of East Point, Thrive SS plans about 10 events a month. In addition to online support groups, it has a senior men’s group, a glee club, a public speaking group, and a psychosocial support group. It also organizes trips and parties for its members.
The value of peer support
Once upon a time, says Hill-Jones, “the rigor that went into program deliverables was sometimes unnecessary and oftentimes stigmatizing, particularly to black gay men.” For example, funders often asked programs to document details of their members’ sex lives. Program officers have since reflected on and critiqued the lack of understanding of this population, he says, and he views collecting and reporting outcomes data as necessary: “If we don’t tell our stories, the field will not see the value and the importance of our work,” he says. “If they do see that importance, more organizations will be able to fund and support that work being done.”
A CDC representative says the agency “has heard and responded to feedback that greater flexibility in monitoring and evaluation would help grantees end the HIV epidemic in their communities.” The agency noted this feedback had been incorporated into the recently awarded funds for the proposed “Ending the HIV Epidemic” initiative, a plan “to reduce new HIV infections in the United States by 75 percent in five years and by 90 percent by 2030.” (Staff at the Ryan White program noted they work with funding recipients by providing technical assistance on how to work within the cap on administrative costs.)
Because federally funded programs gather outcomes data, they often publish the results of their interventions, as do researchers studying peer support in trials often funded by federal dollars. A 2011 review article that looked at 117 studies evaluating the efficacy of peer programs found that most of them had some positive effect. However, the vast majority of them assessed self-reported outcomes, generally regarded as more subjective, less reliable metrics; among the 25 studies that assessed more objective outcomes — such as HIV viral loads or levels of the CD4 immune cells that demonstrate HIV control — only about half demonstrated the peer intervention was successful.
More recent studies have shown some promise of one-on-one peer support among recently incarcerated men and transgender women, and among people of color with risk factors for lapsed care who had stable housing situations.
And in the developing world, HIV treatment programs routinely involve community health workers, who are deeply connected to the people they care for and often share their diagnosis. A robust body of research has shown these interventions increase HIV testing, linkage to treatment, and adherence to medication in these settings.
“Peers will always be helpful to some patients,” wrote Jane Simoni, a University of Washington psychology professor and lead author of the 2011 review, in an email. “But they will unlikely be sufficient to help all patients, especially those with mental health or other issues (substance use, homelessness) that require a higher level of intervention and assistance.”
Data aren’t what have animated the founders and members of peer support networks. While preparing to launch a company that provides online peer support solutions, Ashwin Patel, CEO of InquisitHealth, became deeply familiar with these programs. Historically, peer support networks have arisen “out of mission — this is the right thing to do, this makes sense,” Patel says.
While Thrive SS gathers self-reported data from its members including medication type and adherence, CD4 cell count, and demographic information, it does not conduct the type of outcomes analyses common in public health program evaluation, nor the prospective, randomized, controlled studies that are considered the gold standard of proof in the medical sciences. As a result, it is unclear whether 92% of its members report being virally suppressed because group involvement results in better medication adherence, or because men who take their medications regularly self-select to be part of the group and respond to surveys.
By Scott-Walker’s estimation, about 20% of the men who join the organization are not regularly taking their HIV medication or seeing their care providers at the time they join. He guesses that for about 15% of that cohort, Thrive SS provides the support they need to turn it around. For members with needs beyond social support, the organization helps provide access to services: linkage coordinator Darriyhan Edmond has a weekly goal of making five linkages to services, whether that means health care, food, or housing. The organization offers transportation vouchers to get to health care appointments and free access to an on-site clothing closet for its members.
Edmond often reassures men apprehensive about the health care system by sharing the story of his own HIV diagnosis. When men are particularly skeptical or have fallen out of care, Edmond accompanies them to appointments, waiting in the lobby so they “can have that comfort and that support outside the door.”
At the heart of Edmond’s and Thrive SS’s work at large is what the organization’s membership calls “Judy support,” in which gay black men, taking their collective name from gay icon Judy Garland, sustain and affirm each other. Among Thrive SS’s membership are people with all kinds of competencies, says Scott-Walker, giving it an extraordinary capacity for self-reliance.
“We have doctors, we have lawyers, we have all types of people, and they’re all black gay men living with HIV,” he says. For members, Scott-Walker says, “everything that you need is within your arm’s reach — is within your community.”
This story was originally published on UnDark, a digital magazine exploring the intersection of science and society.
Keren Landman is a practicing physician and writer who covers topics in medicine and public health.