HIV prevention advocates push for change

Always demand a certain level of treatment. That’s what Joshua King told himself as he grew up with a single mother in the suburb of De Witt just outside of Syracuse-- “the land of opportunity,” as he calls it.

As a young black man in a city that is 84 percent white, he knew that barriers prevented him from achieving the same level of success as his peers. As a young gay black man, he knew those barriers were even greater.

"There are so many people who are so far removed from the issue making the decisions as policy makers that they’re making the wrong decisions for the community."
- Joshua King

He remembers going to a friend’s house and being met with skepticism from disapproving parents. He remembers watching his mother balance multiple jobs to provide for him and his little brothers, and driving from medical clinic to medical clinic to find a pediatrician that would accept their family’s health care coverage (Every community health center that did accept it was so swamped with requests that there was no less than a one-to-two-year wait to be seen by a doctor).

Most of all, he remembers the shock of having to switch from the family pediatrician to an HIV specialist when he was diagnosed with the virus at age 18.

“It took me a while to be comfortable and put it out there because of the stigma,” King said. “We’re conditioned to think that once you have HIV you go into hiding and your life is over. That wasn’t fair.”

King’s situation is not unique. Although the narratives of gay black men have been in the spotlight this year through television shows like “Empire” and films like “Moonlight,” both of which have been critically acclaimed for their depictions of black men who desire other men and the stigmas they must overcome, startling new studies have exposed the realities this population faces.

A report published in February by the Center for Disease Control found that half of gay black men will be diagnosed with HIV in their lifetimes if current rates persist. This means they are nine times more likely to contract the disease than gay white men, making LGBTQ+ people of color the most vulnerable population for the disease.

In King’s home state of New York, a study by the New York Health Department found that 67 percent of new HIV cases between 2004 and 2016 occurred among blacks and Hispanics, and that men who have sex with men made up more than two-thirds of all new infections.

Although Governor Andrew Cuomo announced a three-point plan in 2014 to address AIDS prevention through the campaign End AIDS by 2020, community activists say that nonprofits and government agencies are focusing too much on addressing treatment options for people already infected with HIV and not enough time focusing on the structural issues that lead to the contraction of the disease in the first place-- especially when it comes to communities of color.

“We have to talk about this holistically,” said Isaiah Wilson, the External Affairs Manager for the National Black Justice Coalition, a Washington, D.C. based civil rights organization that advocates for LGBTQ+ people of color.

“HIV happens to be the virus: that’s the end result. But the way that we come into contact with the disease is through our environment and the conditions we live in," he said.

We need to recognize that black people are living with more than just HIV.”

A gay black man himself, Wilson tested positive for HIV in 2013 after working as a legislative assistant on Capitol Hill. Having grown up in Atlanta, Georgia, a state that did not implement Medicaid expansion under the Affordable Care Act and has a coverage gap that leaves thousands of poor African-Americans without health insurance, Wilson recognized how economic inequality and inadequate access to health resources contributed to increased risk of HIV for African-Americans in the South, and that these factors were missing from the national dialogue about HIV and AIDS.

“We need wellness and we need support to really understand that we all have a role in ending this epidemic,” said Wilson. “It takes more than public policy. If we don’t have an informed and empowered constituency of people who are able to implement those policies in black institutions, it will go nowhere.”

King said he knows a thing or two about the need for resources and education in African-American communities.

“I saw how the other side lived,” he said of going to a wealthy school in the suburbs while living right outside of Syracuse, the city with the nation’s highest concentration of poverty among blacks.

He lacked the financial stability that many of his classmates enjoyed, and once diagnosed with HIV, he often felt condescended to when seeking resources from health clinics, and questioning why LGBTQ+ people of color like himself didn’t have representation at health agencies working with HIV.

“Why should I listen to some dumb white girl who doesn’t know her ass from a hole in the wall trying to tell me what to do or how to do it?” he said of one particularly aggravating instance.

This lack of representation in health resource centers deters people of color from seeking treatment and getting tested for HIV, which leads to undiagnosed cases that increase the chance of the disease spreading, said Kareem Everett, a grassroots activist in Syracuse who sells candy and chips on the streets of the Southside to fund educational seminars and HIV testing events for the LGBTQ+ community.

“You’ve got a whole bunch of people in the community who are afraid of the people who have these jobs,” Everett said. “They have to connect to the community. You cannot do this kind of work from an office and have people come to you-- you have to meet people where they are.”

Everett is a part of the growing local movement that is seeking to provide minorities with resources and sexual health education through community-oriented outreach. He says that the stigma associated with HIV keeps people from seeking treatment at large health agencies like ACR Health, a nonprofit on East Genesee that was formerly named the AIDS Community Resource Center.

“Would you walk in that door as a gay man?” Everett said. “Because the first thing people are going to say is ‘a known gay man just walked into that building.’ Even though they changed the name, it’s hard to get away from that stigma. Change what you’re doing.”

While Everett finds that his most successful strategy for educating his community about HIV prevention has been through establishing individual relationships-- hosting dinners, offering rides to LGBTQ+ youth, throwing parties-- he also collaborates with the Syracuse chapter of the National Black Leadership Commission on AIDS (NBLCA) to provide outreach to pockets of the city that are most at-risk for contracting HIV.

Corbin Bryant, an emerging young leader for the organization, finds that becoming well-known in the communities he is serving helps people feel more comfortable approaching him for advice or resources.

“Today is World AIDS Day, can I give you some condoms?” he said casually as he approached strangers on the streets of the Westside earlier this month for an outreach event, shaking their hands as he handed them bags filled with condoms and educational pamphlets.“I just want to make sure you’re safe out there-- even if you’re married. Here, take some for the kids, too.”

Bryant began working as a Peer Educator for ACR Health a year and a half ago, but found that through NBLCA, he was better able to be in direct conversation with community members and provide support for people, especially LGBTQ people of color, who would otherwise not seek out services.

“I’m a young gay black man of color, so for me it’s very important to be a part of this movement,” Bryant said, still carrying the “backpack full of condoms” that he packs everywhere he goes. “I’ve learned that you have to reach people where they are, at their level and how they communicate. Then they see you’re not some smart doctor or nurse out here trying to give them information or tell them what to do. You’re one of them.”

One of the resources that Bryant and NBLCA hope to inform communities of color about is pre-exposure prophylaxis, more commonly known as PrEP, a revolutionary new daily medication that can prevent the spread of HIV once the disease is contracted. Although the pill reduces the risk of transmitting HIV through sex by more than 90 percent, a study in 2016 found that 60 percent of gay and bisexual men had never heard of the medication.

Lanika Mabrey, the PrEP coordinator at the Onondaga County Health Department who has been working with the initiative since its introduction to the county in July, regularly joins NBLCA for outreach to educate communities about the pill. During the World AIDS Day walk through the Westside, one man was enthusiastic when she told him about the pill.

“You mean this will stop my HIV from spreading?” he asked in awe as he took a pamphlet. “I’ll give you a call. I promise.”

Mabrey said she feels personally connected to the cause.

“One of the reasons that I’m so passionate about this work is that I lost both of my parents to the epidemic, so I’m very aware of the challenges that we face in the black community,” Mabrey said. “My mother never disclosed her status. For 30 years she kept it a secret because of fear of the stigma. So I’m very aware that I’m serving a community that is very disconnected from resources due to misinformation and bias.”

Mabrey said that before her work in providing health services can make an impact on the local community, she has to engage people in the dialogue who are often ignored or afraid to seek treatment. She emphasized the need for a community-centered approach, and for people of color to be empowered to reach out to others in their community.

The Counter Narrative Project, a national advocacy group that organizes educational webinars and trainings about issues that affect gay black men, also encourages this approach.

“There needs to be a greater investment in leadership development for grassroots organizers,” said Charles Stephens, the organization’s founder and executive director. “We need to build and develop community institutions. There needs to be more community-led, needs-driven institutions in addition to larger health centers. Until we start re-allocating resources in a way that better creates the conditions, I just don’t think we’re going to go very far.”

Stevens said that he would like to see advocates and policymakers in the HIV prevention movement realize that the spread of HIV is a symptom of other injustices. He hopes that organizers can “build bridges across movements” to create systemic change.

“If housing instability is a driving factor in HIV acquisition, then we need to figure out ways that we can partner with organizations that offer housing for HIV negative black men. If economic distress is a significant factor, then we need to be in contact with orgs that are seeking to raise the minimum wage,” Stevens said. “Understanding these social drivers and finding ways to create alliances and partnerships with other entities is crucial.”

Joshua King is an example of what can happen when the people who are most at-risk for contracting HIV are empowered to act within their own communities. After beginning treatment, King began studying organizational and nonprofit management and working as a health advocate at ACR Health and NBLCA.

He now works as a contractor with local health centers, and strives to be a “gap-filler,” speaking from a personal perspective of someone who has contracted the disease to help organizations see what needs and populations are not being met.

Throughout his work, he has noticed that many large health organizations receiving government grants to fight the disease are focusing almost entirely on treatment rather than prevention. He has seen middle schools in De Witt teach HIV curriculum from a textbook from the 1980s. And he has advocated for people of color to have leadership roles in the movement.

“We need to push older white people out of decision making roles, especially when it comes to the communities of color,” he said. 

But still, he remains optimistic, and continues pushing for change.

“I’m hopeful for 2020 because I really would like to see the number [of new infections] decrease,” King said. “But there are so many people who are so far removed from the issue making the decisions as policy makers that they’re making the wrong decisions for the community.”

King’s journey with HIV has been difficult, filled with tears, heartache and challenges. But in the end, he says, he is thankful that his experience as a gay black HIV-positive man has empowered him to empower others, using his voice to help others seek treatment and prevention methods.

“We need to build a kingdom,” he said. “We need to build a legacy of sexual health.”