Who's Still Left Behind in HIV Advocacy: One Woman's Mission

For more than 20 years, Gina Brown has been living with HIV. In that time, she's done incredible work fostering community, championing education and advocating for people from all walks of life who are living with or at risk of exposure to HIV.

Based in New Orleans, her work experience and personal values have led her to the role of director of strategic partnerships and community engagement with the Southern AIDS Coalition (SAC), an organization dedicated to ending the HIV epidemic in the South. But working with SAC is only the most recent chapter in a longer story of community engagement with urban and rural communities, as well as those living without shelter.

"Just because you're unhoused doesn't mean you're not having sex or sharing needles or doing other things," Brown said, highlighting the importance of engaging often overlooked portions of the population when it comes to combating the spread of HIV and mitigating the effects of HIV on the community.

In order to become truly inclusive with HIV care and resources, we need to involve perspectives from people who have been in life circumstances many of us simply haven't.

"We have to start expanding our table and bringing in people who are formerly incarcerated who may not be living with HIV, but maybe they know people and they can talk to other people who can tell us what it's really like to be unhoused," Brown said. "I was unhoused. I can tell you what it's like to live in abandoned houses, what it's like to not have food, what it's like to be cold at night and only have a sweater. I can tell those stories because I was there. But we need people at the table to tell us those stories."

Engaging with houseless and formerly incarcerated populations is just one aspect of Brown's diverse interests in community engagement.

"I engage with all parts of the community," she added. "You can find me anywhere and everywhere."

When it comes to engaging in more traditional policy, Brown said education concerning basic components of American life—as it pertains to policymaking and federal budgeting—is important to end the HIV epidemic.

One of Brown's major contributions to SAC and the fight against HIV is her hand in the creation of LEAD Academy.

LEAD stands for Leadership, Education and Advocacy Development. It started as a three-part training program designed by Brown and her former executive director at SAC, and focused on the meaningful involvement of people living with HIV and AIDS. The program has evolved through data collection and collaboration with Duke University.

"We engage the community by bringing them together and forming local communities within, right? So that they became a network. And, we gave them the education of LEAD Academy," Brown said.

One of her favorite examples of a LEAD Academy initiative included a lesson they did incorporating Schoolhouse Rock's "I'm Just a Bill," an animated educational music video. They wanted people to understand how policy gets made as it pertains to HIV/AIDS, as well as other things. She recalled seeing a roomful of people singing along, building on connections from childhood to adulthood about how policy affects each life in America.

Louisiana, Brown's base of operations, is a state of polar opposites. Compare the dense, culturally rich urban area of New Orleans versus the rest of the state, which is primarily rural. People living in rural communities who are diagnosed with HIV face unique challenges, especially because almost all of the available HIV resources in the country are focused in urban areas.

Brown believes the internet provides hope for these people. Sites that promote HIV/AIDS awareness and champion important social statements like U=U (Undetectable = Untransmittable) are a vital tool for people in rural communities who may be living with HIV but lack immediate resources relevant to their geography.

"People in rural areas don't have the same resources and access," she explained. "That's one of my fights, also, to try and get stuff into rural communities. Because we know that if there is a lack of education, there is a higher percentage or higher chance of contracting HIV."

To this end, Louisiana has a unique program and organization looking out for inter-community education and involvement.

"Louisiana has the Louisiana AIDS Advocacy Network (LAAN)," Brown said. "That's a statewide network making sure we talk about it in all settings so that people in rural areas can have access to that and join that network and help amplify those voices."

The program itself may not be particularly helpful to those living in Idaho or Alabama, but it does highlight the ability of motivated individuals and collectives to bridge gaps in education and healthcare access, which sometimes seem like insurmountable obstacles. If these efforts inspire the development of more programs and initiatives around the country like SAC and LAAN, we may see exponential improvements in the fight to end the epidemic.

So many organizations and policy groups around the country become echo chambers of repeating messages from overly represented populations of people. To combat this, Brown has a simple strategy: "Whenever I'm invited into a room, I always ask, 'Can I bring somebody?'"

Brown's "Bring a Friend" policy is a simple and clear reminder of how easy it is to make space for marginalized voices if we make the effort. In order to elevate the perspectives of underrepresented people when it comes to HIV and AIDS, we have to invite them into the room. And, when those invitations are lacking, we must call it out as fact.

"I look around the room and see who's missing," Brown said. "Those are the voices I try to amplify in the room. If I'm in a room and there are no young, gay, bisexual, same-gender-loving Black guys in there, then that's who I'm going to talk about in that room. I'm going to amplify their voices. If there are no trans women in the room, I'm going to talk about trans women. And, I bet you the next time you invite me to this meeting, there will be somebody from that community. I always make a point of saying, 'I'm not trans and I'm not here speaking with authority, but I'm speaking with compassion.'"

Compassion is a fantastic starting point when it comes to creating these conversations, but it does little if there's no action to follow. Brown explained it's important to initiate the action with clear communication about where priorities lie.

"I'll end by saying, 'You know, it would be really helpful if, at the next meeting, there was a trans woman in this room who could really tell us what is needed in the community.'"

The federal government has come a long way in how it treats people living with HIV and AIDS. Still, we have a long way to go, especially when you consider how COVID-19 has grossly impacted efforts and research to fight the HIV epidemic—particularly ironic when you consider COVID vaccines could not have been developed so quickly if not for the medical breakthroughs with HIV research over the last few decades.

Brown said there are a few groups she would like to see receive more attention from the government.

"I would ask the federal government to make women a priority," she added. "And I say that because we've never been a priority in this fight. Even in the 1990s, it was about the babies we were having. It wasn't about women."

This emphasis on woman-inclusive HIV advocacy—for cis and trans women alike—is important because, by creating such emphasis, we can also help eliminate any stigma and misunderstanding associated with HIV.

Brown noted that for all the community work an advocate can engage in, there are some aspects that still require government help. For women living with HIV to get the kind of help they need, that means being seen first and foremost.

"I want the federal government to see us and look at our unique challenges and how many of us are the breadwinners, heads of households," Brown said. "We can't even take care of our own HIV because we're taking care of everybody else. I want the federal government to see us."

Another area of HIV care that needs more attention is with regard to long-term patients and geriatric populations living with HIV. Brown said older people and long-term survivors of HIV and AIDS often have their general health concerns overlooked because physicians will associate any issue with HIV, warranted or not.

This goes hand-in-hand with the reality that primary healthcare and HIV care are often very difficult to include in one package. Regardless of a person's age, it can be incredibly difficult to have their health concerns recognized because HIV becomes the sort of be-all, end-all of their health concerns.

This plays into a culture of defaulting HIV awareness to those living with or especially at risk of contracting the condition. Brown said this culture is exactly what needs to stop in order for us to get a realistic hope of eradicating HIV.

"I tell people all the time, 'We're not going to end the epidemic just by testing people,'" Brown explained. "We have to educate the community. And we're not going to just educate people living with HIV. Stop putting it on the backs of people living with HIV and let's go out and engage the full community."

It's time more of us started adopting mindsets like Gina Brown and believed we can eliminate the HIV epidemic over time. We need to listen to the lessons Brown teaches: We've got to talk to people where they are, rather than expecting them to come to us for information and resources.