In the early days of the HIV epidemic, people with HIV across the United States organized themselves into networks, providing critical support and community for each other. Their efforts were vital for their own heath, but also led to successful advocacy for treatment access and against discriminatory policies. However, after more effective antiretroviral treatment became available in the late 1990s, the networks began to fade away. As a result, advocates say, people with HIV became increasingly hidden and isolated and their interests increasingly un-vocalized and underrepresented.
As they became more invisible and therefore less humanized to the nation-at-large, stigma against people with HIV mounted, according to Sean Strub, executive director of the SERO Project, a national network of people living with HIV. "It is my feeling that HIV stigma is worse than ever," he explained. "And the most effective strategy to combat this stigma is to empower the stigmatized."
In the current era, groups such as the Positive Women's Network of the USA, SERO Project and the U.S. Caucus of People Living with HIV have helped to foster connection between individuals and networks. Earlier this year, the SERO Project launched an initiative to survey and document the state of networks composed of and led by HIV-positive people throughout the U.S.
The survey marks the start of SERO's Network Empowerment Project, which intends to re-energize networks of people living with HIV nationwide. "The idea was to go out and find out what's out there and learn what they do and how they do and what kinds of support and resources would be useful to them," says Strub.
To help with the project, he enlisted Anna Forbes, a long-time HIV advocate and community organizer; Carrie Foote, a professor of sociology at Indiana University and a member of SERO who has been living with HIV for 25 years; and Tamarah Kilroy, one of Foote's students. The team developed a 20-question survey and disseminated it as broadly as possible with the help of other national networks of people with HIV, and also through Ryan White Planning Councils and other NGOs and LGBT rights groups that have contact with HIV-positive people. What they found surprised and excited them: Over the last five years, people living with HIV nationwide have started organizing new networks on their own.
"There are more networks out there than we thought," says Strub. "They are typically operating in relative isolation, without a connection to a national infrastructure or funding. So that's what we're now looking to do -- give them a supportive context and the ability to communicate and to aggregate our voices."
The survey team received responses from 239 networks -- though only 71 met the criteria for inclusion in the analysis. The questions gauged everything from the networks' size, age and membership demographics to what kind of support they most needed. In addition, the team conducted in-depth interviews with leaders from eleven networks. This month, they released a report summarizing the findings.
The completed surveys came from 27 states, including many in the South, which claims 50% of the country's new HIV infections, its highest rate of HIV-related mortality and some of its worst HIV-related stigma. "I think the impetus for these new organizations forming has been that the situation in many areas is horrible and people can't continue to live that way," says Forbes.
The most cited barriers that kept networks from doing more HIV related advocacy work were securing more funding to pursue advocacy work, people too afraid to be publically identified as HIV positive, limited skill set and participation of network members, and challenges providing transportation for far-flung members.
Besides funding, the two resources that the networks said would be most helpful to them in achieving these priorities were an advocacy "tool kit," with fact sheets and templates they can adapt for their own communities, and a "skills bank" to connect them with people with specific skills needed to organize, fundraise and develop leadership. And as Foote noted, her involvement in the survey was the result of something similar to this bank. "Because I'm living with HIV and a member of SERO, I was willing to help with the survey design and analysis pretty much pro bono," she says. "With networks, people are willing to do that because they have a collective investment in the outcomes."
Robin Webb, executive director of A Brave New Day in Jackson, Mississippi, was one of the survey respondents. Webb, who has been living with HIV since at least 1988, moved back home to Mississippi, where he was born, after living in New York City for nearly 20 years. When he arrived, he found himself slipping into depression due to the lack of HIV support services -- so he founded his own.
"I always say that dealing with isolation and depression as a [person living with HIV] is more dangerous than actually being infected with HIV, and I never felt more fatally challenged than when I was living in isolation in Mississippi," says Webb. Like other groups, A Brave New Day's biggest challenge after funding is its inability to locate people with HIV in its community. But he has an idea to help change that, and intends to advocate until Mississippi lawmakers make it a reality. "The Mississippi Health Department has an HIV hotline," he says. "We want to get on their radar so when people call, they connect them to us or other [people with HIV], and not just to medical services."
Other innovative networks contacted through the survey include Positive Pedalers, a group dedicated to raising HIV awareness and fighting stigma through participation in bicycle-related activities; Positively Trans (T+), a new project working to combat the structural inequalities that fuel HIV among transgender women; and an organization seeking to meet the needs of Latino immigrants living with HIV that is so new that it does not yet have a formal name.
Because networks of people living with HIV understand their own specific communities, they can tailor their responses to meet their exact needs. "They aren't just responding with some template of how to work with [people with HIV]," says Forbes. "In the early days of HIV activism, most of the activists were well-educated, affluent white men, but now the people most affected by HIV are lower-income and more marginalized communities, and have different needs. For example, one woman we interviewed in Tucson said that if her organization had twice the money it does now, she would do outreach in beauty parlors, because that's where she thinks she could find women who are interested in joining the network."
According to Strub, SERO's next step is to use the survey results to identify what they can do to help strengthen, support and connect these organizations to form a national movement of people living with HIV. He envisions a movement that can both speak with a collective voice and support one another in providing community specific local support.
Like many of the organizations discovered through the survey, most of the national networks that helped disseminate the questionnaire were also founded or grew stronger over the past five years, reflecting the fact that the HIV advocacy movement may already be revitalizing at all levels. SERO itself officially began in 2012, and the HIV Caucus launched in 2013.
"I'm really extremely encouraged by the reemergence of [HIV-positive] networks, including the HIV Caucus," says Webb. "I think for us to survive in Mississippi, it takes a reminder that we are nationally connected to a larger set of people -- and that we are not alone."
Lucile Scott is a writer living in Brooklyn, New York, who has written extensively about the global and domestic AIDS epidemics for POZ magazine and organizations including amfAR and Housing Works.