Successes and Challenges Facing HIV Service Providers in Arkansas
We spoke with Ashley Young, onsite program director at Better Community Development, Inc. in Little Rock.
Ashley Young: I’ve been in this role four years, seven years total with BCD. Before that, I worked with AmeriCorps and with Planned Parenthood, doing comprehensive sex ed in the Little Rock School District. Doing that work is always an uphill battle; sex is just a taboo subject here. I fell in love with HIV work. The kids had so many questions about what was going on with their own bodies, and they didn’t know where to get answers. They were way more concerned with becoming pregnant than with getting HIV or an STI, and they didn’t understand that you get it all the same way, by not wearing a condom. But being able to empower them to not get HIV, to help people not make poor decisions—that’s what made me fall in love with the work.
Tim Murphy: OK, cool. What is the history of BCD?
AY: We’ve been around since 1981—it’s the outreach arm of the United Methodist Church. Rev. William H. Robinson, our executive director, believed in serving “the least, the last, and the lost”—impoverished people. At our center is a substance treatment facility. [Surgeon General under President Bill Clinton] Dr. Joycelyn Elders was director of the Arkansas Department of Health (DOH) [in the 1980s] and would meet regularly with our staff, because we realized the correlation between substance use and HIV. So we partnered with the DOH and formed the Minority AIDS Network, which would go out with safe-sex kits [condoms, etc.] and get drug users tested for HIV and STIs.
Back in the 1980s, we would have AIDS funerals at our church, because nobody else would bury people if they heard they’d died of AIDS.
The major development since then is that we now have funding. We used to scrounge up whatever money or donations, such as condoms, that we could. Now we have $2.5 million from [federal substance use prevention and treatment agency] SAMHSA. We don’t get Ryan White money because we don’t do Ryan White services. We do HIV, STI, and hep C testing, but we refer out for medical treatment.
Our total staff is 40 people, mostly African American. Our HIV department, which I head, is all African American, three women and one man. None of us are living with HIV or identify as LGBTQ.
TM: What about the clients?
AY: We serve about 300 people a year in drug treatment, during which everyone receives HIV testing and education. In the past three years, they’ve been about 60% white, 40% Black, about 20% HIV positive, and 10% LGBTQ-identifying.
TM: Do you have any special programs for young MSM of color, who are most impacted by HIV in Arkansas?
AY: No. Every month, we have an HIV education class called “Healthy Love,” a CDC-approved HIV prevention intervention designed for Black women, which we modified for MSM. Cornelius Mabin, our [Black, gay, and openly HIV-positive] HIV planning group cochair in Little Rock, does a lot of work with MSM and LGBTQ people. [See “Positive POV” interview with him below.]
TM: Can you break down your gamut of services?
AY: We offer substance abuse treatment. We do HIV education, a monthly HIV education class. We do blood pressure and glucose testing, HIV and hepatitis C testing and education, and hep A and B immunizations. We provide trauma-informed care and mental health services. We have a personal trainer and nutritionist come in to give classes. We have a community health worker. We get people who test positive for HIV or hep C into care that very day, because we know outcomes are way better when we get people into treatment as soon as possible.
TM: What about housing?
AY: We actually have housing on site, our Empowerment Village, with 30 efficiency apartments, permanent housing for $400 a month, which is low. Still, many people coming out of our substance treatment want to live there but don’t have the money, so many units are often empty. I would love to find a funding source to give people free rent for the first several months.
TM: How would you describe the HIV situation in Arkansas?
AY: I think [progress on improving the situation] is stagnant. Our biggest struggle here is testing. I know from conversations in my own social or family circle that people don’t see themselves at risk if they’re not MSM. There is so much stigma around sex in the South. The word “HIV” is a red flag, and you still have doctors who say to patients, “You’ve been married 30 years—you don’t need an HIV test.” I’ve had to tell pregnant friends to make their doctors give them an HIV test. In Arkansas, more than half of HIV cases are in African Americans and in MSM. The last two years, half of the diagnoses in my agency are Black women. It goes back to [the need for] comprehensive sex ed. If you don’t know this stuff when you’re 13 or 14—[pause] these kids need access to comprehensive sex ed—and surprisingly, their parents want them to have it.
TM: When you did comprehensive sex ed for Planned Parenthood, did you include LGBTQ?
AY: Yes, but not as focused or pronounced [as some sex ed curricula]. We would tell people to focus on the what, the sex act, not the who. Many schools didn’t want us to mention condoms or LGBTQ people.
TM: What successes are you most proud of in recent years?
AY: Three years ago, we were awarded a $1.5 million grant from SAMHSA to do substance abuse and HIV and hepatitis services. Our program did so well in 2016-19 targeting African-American women that in April, we were awarded a five-year, $2.5 million grant in partnership with the University of Arkansas Medical School. We’ll merge substance treatment, mental health, and HIV to expand and enhance treatment and recovery support services. Our focus is on African-American men and women who are caught up in the criminal justice system and who have substance disorders.
TM: Where do you feel most challenged or stuck?
AY: Housing. Our treatment facility is residential, so we can shelter people for 30 days, but I feel guilty about when they have to leave without a safe place to live. If I had all the money, that’s what it would go to.
TM: In a related question, what are your programming goals for the coming years?
AY: Definitely more money for housing—and outreach. I would want to make people more aware of their risk [for getting HIV] and increase our PrEP uptake.
TM: Do you have a PrEP program?
AY: We offer referrals elsewhere. We’ve been so busy doing HIV testing and other stuff, we haven’t focused on it. We refer people to Dr. Thomas Jefferson, a private doctor. We only have about 10 doctors in the region who prescribe PrEP. A lot of doctors believe that prescribing it increases promiscuity. A couple years ago, we tried to hold a PrEP info session for area doctors—I’m not sure what the outcome was. So we have to get people more informed.
TM: How would you go about doing that?
AY: When I talk to clients about PrEP, explain, “There’s this drug ...” they want to be on it, but they can’t get an appointment for it until after they leave [residential drug] treatment, so we don’t have a way to follow up. We try to get them the appointment while they’re still under our care. But I know of only two clients who’ve gone on it.
TM: Can you share any stories that illustrate your work and challenges?
AY: We’ve had several people come in who, when we ask to test them for HIV, they tell us that they already know they’re positive. So we’ve had success the past two years getting at least four people back into care, because it’s hard to be in care when you’re actively in your addiction. I know at least three of them are still in care. For me, those are my successes.
Positive POV: Cornelius Mabin
We talked with Cornelius Mabin, 58, of Little Rock, who is founder and CEO of Arkansas RAPPS, which provides health education and linkage to care focused on LGBTQ people of color. He was diagnosed with HIV in 1987.
Cornelius Mabin: We’re an HIV-prevention grantee. We provide HIV and STI testing as well as PrEP services. Our new Living Room wellness resource center has been open 42 days. We’re planning to have focus groups with MSM [about how to program the space].
I grew up in Little Rock. We’re a growing city in the South, with Frank Scott as our first Black mayor. We’ve come a long way and have a diverse and growing people of color population, people from Honduras, Venezuela, Latin America.
Tim Murphy: You identify as gay, correct?
CM: Yes. I probably realized this when I was around 10 years old and told my folks when I was 15. They weren’t sure what to make of it, but in the long run, they became very accepting, and we had a great relationship until both of their deaths.
TM: How did you find out you were HIV positive?
CM: I think I was 29. I was working at a hotel. I had an encounter that I thought might have given me an STI, so when I went to have that checked out, I asked to be tested for HIV as well. I was positive. The nurse wanted to offer me prayers. I said, “That’s very nice, but what I need right now is next steps.” And they didn’t have any.
So I began to see what providers would be available. We had at that time maybe only one agency to give me info, so I had to ask around. I ended up going to a private specialist in Little Rock who was very forthcoming and whom I felt very comfortable with. Probably about 45 days after that, I started AZT. I had some nausea and diarrhea in the beginning, but I stuck with it.
TM: Did you tell anyone about your diagnosis?
CM: Not in the beginning. I was doing well and had private insurance, so I didn’t feel like there was anything I needed to share. I never felt like I was going to die. I never got sick.
But I think about six years after my diagnosis, I was doing work in the community and realized that nobody was talking about HIV, so I started to share my status with close friends. I knew a few other positive folks, and we started to talk among ourselves. In the capacity of the work that I do now, some people have criticized me for not being more vocal about my status at that time. But at that time, it wasn’t something I felt I needed to share.
TM: Would you share your status with sexual partners?
CM: I didn’t have many sexual partners, and when I did, it was just mutual masturbation or role-play or what they now call cuddling. But when [penetrative] sex happened, I used condoms.
TM: Did you ever tell your parents?
CM: Yes, much later. My mom asked, “What’s going to happen to you?” She had fears of household transmission. She wouldn’t let me use her silverware, and she threw my plates in the trash. I said to her, “You’re gonna need to buy more plates if you keep throwing them away.” And I said: “I realize what you’re doing, and it’s not necessary, because HIV isn’t transmitted that way.” But it took a while for her to stop doing that.
TM: So how did you become an HIV activist?
CM: I’d already been out there as a public advocate for gay rights, speaking at the capitol, etc. But when some of my close friends died of AIDS in the early ’90s, I thought, “This is serious—does this mean I’m dying next?” Then I decided, “I’m living, dammit!” I started seeing what resources we had in the area, going to briefings at the DOH. They’d ask me, “What are you doing here?” And I’d say, “I’m not sure, but you’re talking about HIV and I want to hear about it.” Then I joined the National Association of Black and White Men Together. They were doing HIV stuff, so I got info from them. I eventually joined their board, as well as the board of the Arkansas AIDS Foundation. [Ed.: It closed in 2019. ]
TM: How did you start your group Arkansas RAPPS?
CM: It started as a social group for Black gay men in my living room in the late ’80s. Other than bars, we had no social outlets. We got as many as 15 people at one point. We would discuss racism, homophobia, our economic conditions, relationships.
TM: What about HIV/AIDS?
CM: We didn’t talk about it at all. I think people didn’t want to have that conversation, and I wasn’t out yet with my status and didn’t know how to disclose to them. It came up much later, when people we knew died.
So now RAPPS is part of the Living Room wellness center. I run it with my partner of 25 years, James. Currently the funding comes out of my own pocket. I found the space and wanted it, so I’m paying the rent. We couldn’t wait until the grant cycle starts early next year. But hopefully next year we’ll get state funding. We’ve never had this kind of space for people living with or at risk for HIV. We’re focusing on MSM of color, but we’re open to the community as a whole.
TM: Why do you think there are disproportionately high rates of HIV among MSM of color in Arkansas, and how do you close the gap?
CM: I think we must continue to educate and link people living with HIV to care. I see here in Little Rock a lot of individuals who don’t want to go get tested. So I thought opening this space would help people know who I am, and that if you test positive, I’ll walk you through the situation, get you linked into care as quickly as possible, and be there with you all the way through. Nobody’s tested positive in the space so far, but we’ve been open only 42 days.
TM: How is PrEP going in Little Rock?
CM: It’s not! And that’s another problem. Again, it’s the lack of education, understanding what PrEP is and how it works. Now that the federal government is going to roll out free PrEP, I’m making sure that I have all that information at the space and on my Facebook page. I’ll tell people to come to me if they have PrEP questions. The state has failed to educate about and connect people to PrEP. I would love it if the space eventually could be able to dispense PrEP after 5 p.m., unlike most places.
TM: How is sex ed in Arkansas?
CM: We’re not doing it very well. We’ve got a lot of resistance from our lawmakers, who are living in the Dark Ages. We’re always at the top of the list for STIs or teen pregnancy rates. We can’t deal with these issues properly, because lawmakers always make it all about [opposing] abortion.
TM: Can you share a story that illustrates your work?
CM: Just five weeks ago, I got a message from a 25-year-old man I know saying that he was in the hospital. So I went there. “You actually came,” he said to me. “Did you think I wouldn’t?” I asked. He said, “I need to speak to you, because I’ve been lying to you for many years. I was living with HIV and never told you, and even though I came to all your talks, I did not stay retained in care. And now here I am in the hospital with an AIDS diagnosis”—he had pneumonia—“I want to apologize to you.” And he started to cry.
So I said to him, “Look, you have good doctors here. They’ll revive you, get you on a new HIV regimen, and move you forward.” And he said, “Even though the doctors told me that, I needed to hear it from you.” So every day after that, I messaged him affirmations, and now I’m happy to report that he’s doing well.
TM: Did you ask him why he didn’t stay retained in care?
CM: He said, “I saw you, and you were doing so well, so I didn’t think I needed to.” And I said, “I’m doing well because I take my medications.” He didn’t make the connection.
TM: Did hearing that make you wish that you had talked more explicitly about having HIV and taking your meds?
CM: After that visit, I thought, “You know, maybe there are others who don’t make the connection that I have been taking meds for decades.” So I think I will share about that more, how I take my HIV meds right alongside my blood-pressure medication.
TM: Cornelius, what do you do for self-care and joy?
CM: I go and have a nice little spa day for myself. I love getting pedicures and being pampered. I also love watching PBS on Sunday nights. I’ve watched “Masterpiece Theater” ever since I was 11 or 12. PBS has turned me on to a lot of stuff I’d otherwise not know about, like ballet. I love “Endeavor.” It’s a PBS murder-mystery show. Also, James and I like to relax with some adult beverages and tell each other adult jokes that we can only share with each other. We also like to go out to dinner—less so now, because we’re funding the Living Room.
TM: What do you make of your life’s journey so far?
CM: It’s had a lot of twists and turns, valleys and peaks, and I’ve met a lot of wonderful people. After I established the Living Room, I wished that my friends who died could see it, because they’d be really proud of me. I think this place will be my legacy, and I hope I can create the next wave of leaders. But I don’t see myself quote-unquote retiring anytime soon!