Fighting to End the Invisibility of Women With HIV

For years, the public face of the HIV epidemic has been made up almost entirely of white gay men. There have been a few prominent exceptions, like Magic Johnson and Ryan White, but the bulk of HIV prevention and care was directed at this single community, allowing it to spread at devastating rates in other populations.

The Centers for Disease Control and Prevention reports that 50 percent of Black gay and bisexual men will contract HIV in their lifetime. Black Americans represent 43 percent of new HIV diagnoses in the nation, although they represent only 12 percent of the population. Cisgender Black women are 16 times more likely to be diagnosed with HIV than cis white women.

Gina Brown, now the community engagement manager at the Southern AIDS Coalition, has been working in the field of HIV for 18 years and living with HIV for 27 years. She joined the fight to help end our culture's seeming invisibility of women living with HIV.

"I saw so many women dying of shame. I saw so many women dying of guilt. I saw so many women paralyzed because of stigma. And I remember how that felt," she says. "We know that if we're going to end this epidemic, we can't just talk to people living with HIV. We have to talk to people outside of that. I'm talking about poverty, talking about jobs, talking about housing. We know that housing is not just health care, but it's also prevention."

This week on the LGBTQ&A podcast, Brown talks about why the stigma toward women living with HIV has remained so great, HIV criminalization laws in the South, and why we need to do a better job of educating our youth. "They're bearing the burden of this virus," she says.

Read an excerpt below, and listen to the full podcast interview on Apple Podcasts or Spotify.

Jeffrey Masters: After you were diagnosed, did you see or find community with other women?
Gina Brown: It wasn't until I had my daughter and started going to the HIV outpatient clinic. I remember the first time I walked in and it had like 10 women in the waiting room, and I got angry. And I said, "Where were you?" And this one girl looked up and she was like, "What?" I said, "Where were you all? Where were you all when I needed to know this happens to women?" And I vowed at that moment that if I ever got the courage and a microphone, that I would be that voice.

It's been an amazing journey. My health literacy is a lot higher than it was then. I remember I was living with my mom, sleeping in the room with my niece, and I used to lay under the covers at night with a flashlight and read these pamphlets. There were words I couldn't even pronounce, and I would write them down and I'd say, "When I go to the clinic, I'm going to ask, 'What's this word? What does it mean?'" And I would do that.

Were you gathering information back then pamphlet by pamphlet?
Yes. Yes. Every time I would go to the clinic, they would have Poz magazine and I would read Poz magazine. And then I found out about TheBody and I found out that you can go to TheBody online and people didn't have to know what you were doing. Just really wanting to know.

I started out being very selfish. I wanted to know for me. And then I wanted to know for my community. I wanted to know for the women in the clinic who were sitting there every week or every three months when we would go to outpatient clinic and they would say, "I got a man. He don't know I have this and we don't use condoms because a woman can't give it to a man." And I'd be like, "Oh, lord. Oh, lord, that's not true."

For men, the stigma around HIV is often tied to promiscuity. How does it differ across genders?
I just had this conversation with a girl. I said, "Well, promiscuity is a judgment statement." And she said, "Huh?" And I said, "Yeah, it's a judgment statement." I said, "Now, what I say is, 'I've had multiple sex partners over the years.'" I said, "But then I go a step further and I educate people and I say, 'You don't get HIV from multiple sex partners. You get HIV from one sex partner who was living with HIV.'"

And because we don't have those conversations with our sex partners. I'm in recovery also -- in August it'll be 29 years I've been clean and sober -- even the life I was living, if I was with somebody and I said, "Use a condom." And they'd say, "Why? What's wrong with you?" And I would say, "Nothing." And then I would let it go because even using a condom for a woman or introducing a condom into something for a woman can be stigmatizing.

We still have people with toxic masculinity who think that if a woman carries condoms, she has to be some kind of you-know-what. And it's like, that's not true. She's taking care of her body.

What was the moment when you decided that you'd be open publicly about living with HIV?
I saw so many women dying. I saw so many women dying of shame. I saw so many women dying of guilt. I saw so many women paralyzed because of stigma. And I remember how that felt.

I had ran across a lot of women I knew, and most, when they would hugged me, they would whisper in my ear and they would say, "Don't say anything, don't nobody know." And then I would whisper in their ear, "Are you in care?" And they would say, "No." And then I would tell them, "Take my number. Give me a call." And I would tell them where they go for care, things like that. That was the case for a lot of women.

Can you describe your role at the Southern AIDS Coalition?
I am the community engagement manager. I always say I'm the boots on the ground. I'm the person that's really immersed in community. So not only community of people living with HIV, but those impacted by HIV. We know that if we're going to end this epidemic, we can't just talk to people living with HIV, we have to talk to people outside of that. And not just about HIV, all of the things, what we call social determinants of health. Talking about poverty, talking about jobs, talking about housing. Real housing. We know that housing is not just health care, but it's also prevention.

My passion is to really give people not only more education in HIV, but more health literacy and policy information.

What are the biggest stigmas you're working to combat?
The biggest thing, I think, for people living with HIV, first of all, is our internalized stigma. It's all of that stuff we say to ourself when we first get our diagnosis that sometimes live in our heads for years.

But we also have that externalized stigma, the stuff we hear in our community, right? Oh, this one still goes on in 2021: People go to their family member's house, sit down and have something to eat, and they give them a paper plate, throwaway fork, and a plastic cup, and everybody else has glass stuff. That still happens. I used to work at an organization. I went in the bathroom one day, I left out, I went back because I left something, and I smelled bleach as soon as I opened the door. One of the case managers was in there with a bottle of bleach, bleaching the bathroom.

We have to do a better job in educating our youth, who are now, they're bearing the burden of this virus, and we have to do a better job in educating them. We have to make sure that when we're advocating to get rid of criminalization, HIV criminalization, that we're also advocating to include comprehensive sexuality education in our schools because kids need to get the facts.

Listen to the full interview with Gina Brown on Apple Podcasts here.

Last week's episode with Sarah Schulman, author of Let The Record Show: A Political History of ACT UP New York can be listened to here.

LGBTQ&A is The Advocate's weekly interview podcast hosted by Jeffrey Masters. Past guests include Pete Buttigieg, Laverne Cox, Brandi Carlile, and Roxane Gay. Episodes come out every Tuesday.