Successes and Challenges Facing HIV Service Providers in Baltimore
We talked to Lynda Dee, a recently retired attorney who is the executive director and cofounder of AIDS Action Baltimore.
Lynda Dee: I’m an old fag hag! My husband had AIDS, so we moved back to Baltimore in 1986 from New York City, and he went into the hospital, and died in 1987. I was watching so many of my gay friends suffer from AIDS-related opportunistic infections, suddenly not able to pay their rent. I thought, “I’m not standing for this.” With Garey Lambert, I cofounded the agency. We had our first benefit in 1986. We started a pentamidine access program to treat AIDS-related pneumonia. We were the original renegades!
Then more women and people of color started being affected by the epidemic, and most of our funding went to those cases. We provided case management and successfully pushed the state to push the larger and now-defunct Baltimore AIDS organization [HERO] to do the same. We had no paid employees for years.
Tim Murphy: What is the agency like now?
LD: We have a new base in Mount Vernon, the gay area. We have a budget of about $400,000 a year, and our staff is me and our office manager, Jeffrey Grabelle—we’re both white—and our three other staffers are people of color: Ali Moody and Falina Laron do outreach, and Jay Mangum does linkage to care. Everyone’s LGBTQ but me.
So we have city money to do PrEP outreach and linkage, so we attend a lot of events. We have three support groups: an empowerment group for [not necessarily HIV-positive] MSM [men who have sex with men], and two HIV-meds adherence support groups. We lost our CDC [Centers for Disease Control and Prevention] funding for a group we had for trans women. But the groups are important, because if you can’t get people to care about themselves, then they won’t get linked to care, or will get linked, then drop out. Every other month, we have a mixer, because it’s important to have fun amid all the heaviness. We collaborate with a lot of other groups and agencies in town to connect people to housing, health care, transportation. Most people in Baltimore get their HIV care through Johns Hopkins,
the University of Maryland [UMD], or the Chase Brexton health centers.
Jay will do intake, then we literally walk people over to Chase Brexton for HIV testing and linkage to care, then we urge people to see Jay every three months. We’re like a family here.
TM: How would you describe the HIV situation in Baltimore?
LD: The health department has only recently gotten coordinated around HIV with its PrEP program. Most of our HIV-related funding is federal. Historically, the city’s attitude has been, “You’re on your own, baby.” But now, the city has some really committed people working on PrEP uptake, like assistant health commissioner Adena Greenbaum. They also just started a U=U drive, mainly over social media. Most of the new HIV cases in the city are in MSM of color and trans women of color. But we’ve had a drop in numbers in recent years, which is due to coordination and effort. This is not rocket science! It’s just employing old-fashioned activism and public health principles.
TM: What are you most proud of?
LD: All our support groups and linkage to care/services programs, which we’ve built in the past three years. We did it with the PrEP money we got from CDC via the city health department, but we’ve tried to use some of it for HIV-positive folks.
TM: Where do you feel stuck?
LD: We’re getting that PrEP prevention money, but we don’t have the funding I’d like for programs specifically for HIV-positive people and/or transgender women. Big donors like Elton John AIDS Foundation and Gates don’t care about little organizations like us, so we’re stuck with drug company money, and that’s my least favorite kind of money. But when your choice is to either take or not take Gilead money, what choice do you really have?
TM: Tell us a few stories.
LD: We had a twentysomething, black, HIV-negative MSM man come in recently. He likes trans women, and there’s a lot of stigma around that in his community. He came in with no job, no home, and now he’s got a job and he’s on PrEP—and we helped him with all of that.
TM: You also do a lot of drug research and policy work on the federal and even global level. Tell us about that a bit.
LD: I’m part of the AIDS Treatment Activist Coalition (ATAC). We still meet regularly with the drug companies. I’m focused a lot right now on cure research and on trial design for HIV treatment and PrEP that will be long-acting injectables. With cure research, it’s like being back in the AZT days with HIV treatment. We know a lot about what doesn’t work, but we also know that an effective cure will involve multiple interventions, not one thing at a time.
Positive POV: Ali Moody
We talked to Ali Moody, outreach coordinator and program director at AIDS Action Baltimore, who was diagnosed with HIV in 2002.
Ali Moody: I was born and raised in Baltimore and started having [gay] sex at 14. I was told that being gay was synonymous with being HIV positive, so I decided that after a sexual encounter I had when I was 16, I would get tested, right after my first Gay Pride. I was in a relationship with a gentleman and we hadn’t been using condoms. I’d asked him about his status before we had sex [without condoms], and he said he was fine. Anyway, I got tested in my school’s nursing office, and a counselor called me out of lunch over the loudspeaker to go to the nurse’s office. When I got there, the principal and school counselor were all there. They said that my HIV test came back positive, and they were going to send me to an outside clinic to get a confirmatory test.
TM: What was your reaction?
AM: I was devastated. My first thought was that I’d never be able to have children, which I’d been planning to do to appease my family when I came out to them as gay. I didn’t tell anyone my HIV status for 10 years. I dropped out of high school after that and left home at 16, because I was having family issues there. I was homeless for a little bit. I was getting my HIV care at the HIV clinic at UMD. There was a support group there, and I started getting help from them. I eventually got help to finish high school online. I was really just couch surfing. Eventually I found a roommate. I was now out as gay but living a stealth life, with my HIV under the radar.
I moved to New York City in 2005. At that point, I felt like it was a little safer to talk about my HIV status. I worked in retail and at a gym, staying with a friend but eventually getting my own place in the Bronx. I got my HIV care at New York Presbyterian. New York is essentially my second home. I was trying to find myself as an adult, because I didn’t know who I was outside of my HIV status. I didn’t want prostitution for myself, because that led to drugs and harmful situations. I did eventually start selling drugs. I was trying to go to school but needed my parents’ consent, and my dad didn’t want to give it.
So to avoid going further [into the drug life], I came back to Baltimore around 2008 and lived with my best friend and eventually found work. I went to massage school and also became a tattoo artist and opened a shop with a woman who is my good friend. I’d actually told her my HIV status before moving to New York.
I didn’t start taking HIV meds until I came back to Baltimore. I’d always kept a high T-cell count and a low viral load. But once I was in care, I started learning that access to care in New York was totally different than here. I had a doctor back here in Baltimore who waited way too long to do tests that I asked for. So I switched doctors.
TM: How did you become an HIV community advocate with AIDS Action?
AM: I went to a summit at UMD in 2014 about PrEP. I didn’t believe that it had been out since 2012 and many white gay men were on it, but it had not been marketed to the African-American community. I knew people who’d seroconverted and could have had that option available to them. I was angry and felt like the medical system was failing our city. I decided that the only way to make a difference was to get involved myself. At this point in my life, I was feeling purposeless and needed some kind of mission that wasn’t just a nine-to-five job. So in 2015, an opportunity came up at AIDS Action to be an advocate and a PrEP navigator. One of the counselors there knew me from UMD, and we had talked about me looking into the field. So I jumped on the opportunity.
So initially there were no PrEP initiatives in the city. We at AAB were the first to get some funding, and I knew the most effective way to reach people was through the [sex and hookup] apps. So I would build profiles on Adam4Adam and Jack’d based on info about PrEP—and it worked. I’d say, “Hi, this is Ali at AIDS Action, have you heard about this drug, and do you want more info?” I had a lot of combative conversations with some folks who thought that PrEP wasn’t really true—they thought it was a lie. They’d ask, “If this came out in 2012, why am just hearing about it?” I’d just be honest and build trust and ask people to be open and honest with me. There were no posters anywhere. Many guys thought I was cute and wanted to come to the office to see me. I was out there hitting wherever the gays were, the bars and clubs. I’m kind of a popular character in the gay community. I’d been a manager at the Rite-Aid in the gayborhood, so my face was always around.
We offered support groups with activities called PrEP-UP. We did lunches and art sessions. After that, other agencies started getting funding to do PrEP, and suddenly everyone was on the apps promoting it. I facilitated conversations about the stigma around PrEP, of having to take “HIV meds,” and the whole factor of not wanting people to think you’re a whore. Then initially we would refer people to Chase Brexton for their prescription. I’d say we reached at least 800 people through the apps and brought in at least 50 to 100 people per quarter.
In 2016, we started a program called New Horizons with an empowerment grant we got through [HIV drugmaker] ViiV. It was built around doing conversations around homophobia, racism, stigma—things that affect gay black men. We also got four different support groups going that were “status neutral,” meaning that your HIV status didn’t matter. I learned early on that people didn’t want to be siloed as either an HIV or a PrEP patient. We ask people outside the agency to co-facilitate with us, and we work on self-awareness, self-esteem, self-advocacy, how to hold providers and other folks accountable.
TM: Did you get a sense of purpose from the work?
AM: Yes. I suddenly had a mission that was not about me. I needed to give back to the community that gave to me, to folks who were essential to my development as an adult. I learned that I’m a leather man. After my breakup, I joined a club, Onyx Mid-Atlantic, for people of color interested in the leather lifestyle. As far as public health goes, I felt like I needed to be in the leather community versus the overall gay community, because it was being overlooked. So now, outside of my AAB work, I teach the leather lifestyle, kink and fetish. I love the freedom that you have to be yourself in that world. I’m learning to be more myself every day.
Currently I’m on a tour in Michigan called Sex, Hooking Up, and the Apps sponsored by LGBT Detroit. I was asked to give the perspective of a black leather man in a polyamorous relationship, which I am in currently. We’ve already been to Flint, we’re in Lansing today, and then we’re headed to Grand Rapids and Kalamazoo. We’re talking a lot about HIV criminalization laws. [Michigan] just changed its law [to no longer apply to those on HIV treatment and virally suppressed, and to exclude all sex acts but anal and vaginal intercourse].
TM: What do you make of the HIV situation in Baltimore?
AM: What’s going well is that we’re able to have better conversations around HIV disclosure. The stigma has lessened in the past 10 years, to the point that when I’m talking to people in public spaces about HIV, PrEP, and U=U, people aren’t getting up and leaving the room. They want to be in spaces that educate them about HIV, and they can reflect back to me the information I’m giving them. It’s become a norm to have these conversations.
TM: What are your goals in the years ahead?
AM: Shifting the conversation away from targeted communities, such as gay black men or lesbians, and just having the conversation about human sexuality as a whole. I would like to see a space where we can talk about healthy lifestyles. What I do in the kink world is how to do things safely, and that involves sexual health. I probably won’t leave AAB unless I leave the state, but this will still be my life work.
TM: How would you complete the sentence, “Ali is ...”?
AM: ... a multifaceted, complicated creature. My purpose is to serve the community that has served me. I’m caring, hopeful, and powerful. I’ve learned that I have the power to advocate for myself and others in a way that they may not yet have. Even me doing this interview is a heavy step. I’m saying words out loud that I haven’t discussed with anyone. My mom and dad know my HIV status, but the rest of my family, not so much.
TM: What do you make of your life at this point?
AM: I was a kid once, trying to figure out adult things. As an adult now, I’m better able to advocate for myself and make better life decisions. I’m living my best life—quote-unquote! [laughs]