Lack of Health Insurance and Housing Are Barriers to Care in Fort Worth, Texas

In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called [Eyes on the End [https://www.thebody.com/article/the-united-states-says-itll-end-its-hiv-epidemic-were-watching]]. This series will include a snapshot of the HIV epidemic in each of the 48 counties, seven states, and two cities targeted within the plan. These profiles aren’t meant to be the definitive story of the epidemic in each locale, but rather—through sharing some basic statistics and interviews with a few key stakeholders—to provide some context for what’s occurring there, and what it will take to end the epidemic in that area.

The Big Picture: HIV in Tarrant County (greater Fort Worth), Texas

HIV services in Texas’ fifth-largest city are strong, but a lack of expanded Medicaid and poor sex ed in schools complicate Fort Worth’s efforts to bring its HIV rates down from a decade-long flatline.

Need-to-Know Stats About HIV in Tarrant County, Texas

• New HIV cases in the county have remained mostly flat in the high 200s from 2009 to 2018. Most new cases are in Black and Latinx men who have sex with men (MSM).
• Among people living with HIV in Fort Worth in 2018, 72% were retained in care, and 88% of those retained in care were virally suppressed, compared to 86% viral suppression statewide.
• 2018 viral suppression rates were highest among white and Latinx MSM (92%) and lowest among transgender women (79%).
• 2018 retained-in-care rates were highest among white MSM (79%) and lowest among Latinx transgender women (55%).
• Between 2016 and 2018, the county ranked second nationally in terms of highest spikes in syphilis cases.
• In a state that has not chosen to expand Medicaid access, and with the highest rate of uninsured people in the country (17.7%), Fort Worth has an uninsured rate of 19.4%.

Successes and Challenges Facing HIV Service Providers in Tarrant County, Texas

We talked to Mel LeRoy, associate executive director of AIDS Outreach Center in Fort Worth.

Mel LeRoy: I’ve been in this role five years and previously worked at the HIV agency Resource Center in Dallas. Our acronym here is AOC, and our website got a lot of traffic and our social media a huge spike the past election season [in 2018], because people thought we were associated with the other AOC, Rep. Alexandria Ocasio-Cortez. [laughs]

Like so many other AIDS service organizations, we started as a volunteer, grassroots effort in 1984, responding to the epidemic in our community, helping people with end-of-life issues. We became an official 501(c)(3) nonprofit in 1986. Since then, we’ve grown to offer a really broad range of services for people living with HIV, but also with a strong focus on HIV prevention. In 2017, we affiliated with AIDS Healthcare Foundation (AHF), and they’ve helped us expand our programs even further.

We have a staff of 43, with about 12 contractors. Of the staff, 25% is African American, 30% is Hispanic, 40% is white, and 5% are other or multiracial. Women are 69%, men 30%, and transgender people 1%. Openly LGBTQ people are 40%, and staffers openly living with HIV are about 5%. As for leadership positions, four of five senior staff are white, and one is Hispanic. We know we have room to grow in that area and are making a concerted effort to promote from within the organization. We always encourage staff to pursue educational opportunities and are incredibly flexible in working with them to adapt to school schedules.

As for clients, we serve annually about 1,800 people living with HIV—approximately 45% African American, 30% white, 20% Hispanic. Seventy percent are men, the vast majority men who have sex with men (MSM); fewer than 5% have injection-drug using histories, and 1% are transgender or nonbinary. But if you’re talking about all our outreach, testing, education, and PrEP [pre-exposure prophylaxis] program, we probably touch close to 10,000 people a year.

Tim Murphy: Can you talk about your gamut of services?

ML: For our clients living with HIV, we try to provide everything that helps keep them in medical care. So we have care teams made up of patient navigators and case managers. Our peer advocacy program, which we launched two years ago, focuses on newly diagnosed clients or those who have been lost to care. We also have a counseling program that provides individual and family therapy as well as support groups, including ones for substance use, Spanish speakers, and for long-term survivors of HIV/AIDS. We also have Positively Empowered, a weekly health education and social support group for HIV-positive women.

We offer health insurance assistance via Ryan White funding. We will help pay premiums, copays, and deductibles. We also receive outreach funding for our area, focused on clients who’ve been lost to care. Our staff works with the local clinics and hospitals to try to bring them back into care. We operate a food pantry with a licensed dietitian who meets with clients. We have a full dental clinic serving more than 800 patients a year.

We don’t provide primary care, but we have a very strong partnership with each of the clinics in our area, including a clinic that AHF has in our building. Quite a few of our clients go there, but many also go to the department of health or the Healing Wings clinic at John Peter Smith Health Network.

TM: Do you do housing?

ML: A lot. We have been the local provider for HOPWA for more than 20 years, but in the last three years, we’ve added a rapid re-housing program. We’ve also had some additional funds from the county for us to be able to focus on short-term supportive housing. We don’t have [our own] facility-based housing. We assist clients in identifying spaces in the community where they can get housing, and we give rental and utility assistance.

TM: Is there more need than resources in your area when it comes to housing for folks living with HIV?

ML: There’s a desperate need. We’re working closely with our administering agency and the county homelessness coalition to try to find better ways to address the issue. We need facility-based housing. And while we’ve gotten additional county funding, it can be very restrictive as to what situation clients have to be in when they apply. We have great relationships with landlords, because we’ve been programming HOPWA funding for so long, but it can still be incredibly difficult for some of our clients, given their financial or criminal history, to find a landlord willing to work with them. AOC providing its own housing is something that is being discussed. Our board of advisors is going to be doing some strategic planning early next year, and I hope to see that as a long-term goal.

TM: What does AOC do on the prevention side?

ML: We offer completely free HIV and STI testing. We launched a PrEP program in 2018 that services about 200 people. We also offer free office visits, labs, hormone therapy, and counseling for transgender people. The medical staff in that program are all contractors and are not trans. Our receptionist is trans.

TM: How would you describe the HIV picture in Fort Worth?

ML: HIV rates have been flat for several years. So we still have a lot of work to do. In our own testing program, about 80% of new diagnoses are in men of color under age 29, almost all of them MSM.

TM: What are the gaps that must be closed to improve the picture in Fort Worth?

ML: Our biggest struggle is stigma. Fort Worth is an incredibly friendly place, but it’s fairly conservative—certainly more so than Dallas or Austin. What is really needed is comprehensive education about HIV. Like in so many other communities, it’s not part of our conversation.

TM: Is sex ed taught in local schools?

ML: Yes, in middle and high schools, but there isn’t a focus on sexual health for LGBTQ young adults, and unfortunately the sex ed doesn’t urge HIV or STI testing. I think there are a number of organizations that have been working toward more comprehensive sex ed, but to date they’ve not been successful.

TM: Has there been any substantial PSA [poster or other media] campaign around HIV, U=U [undetectable equals untransmittable], or PrEP?

ML: Not at this time, but we’re hopeful that the [promised] Ending the Epidemic funding [from the Trump administration] will help bring that.

TM: Where do you feel you’ve had the most success in recent years?

ML: I’m always incredibly proud of the work the staff are doing every day. Programmatically, we’ve been able to expand in ways we couldn’t have dreamed of a few years ago. We’re now assisting well over 200 clients a year on housing, versus 120 a year ago. And the peer advocacy program has been a really wonderful addition to our staff. Right now, we have two peer advocates, including Wilburn (see “Positive POV,” below), and we’re actually going to expand to four in the first quarter of next year. For clients to have the shared experience [of living with HIV] with the advocates has really made a world of difference.

TM: How is your PrEP program going?

ML: Overall, well. With about 200 people enrolled, we still struggle with [getting people to stay on their PrEP] more than we would like. People say that the quarterly labs are a burden. Typically, if people aren’t adherent, it’s because they ran out of meds and for whatever reason didn’t resupply themselves. Typically, many get back on PrEP. But we’ve had one HIV diagnosis among those who’ve dropped off PrEP. We’ve talked about the adherence issue, and we’ve set aside money next year for a lab test that tests PrEP adherence to enable our medical staff to really know who’s taking their meds and to be able to direct conversations about adherence toward those clients. It’s a urine test that we normally wouldn’t conduct [so, yes, we will have to explain to clients that we are testing their adherence].

TM: Where do you feel frustrated or stuck in your work?

ML: We have more limitations than we would like based on our funding. So much of the work we do is siloed because of specific service categories, which can make things more complicated than they need to be. For example, we can’t use money earmarked for a support group to buy food, and people are more likely to attend if you can offer something to eat. We have to pay for that out of general operating funds, which are limited. And we can’t use cash incentives for clients to make their appointments, which we would really like to offer, specifically with our young male clients, to improve treatment adherence and viral suppression rates.

TM: What is your viral suppression rate overall among the clients?

ML: Overall it’s 89%, but it’s 76% for young MSM, which is still higher than the county rate, which is around 60%.

TM: What would you do with substantial new unrestricted funds?

ML: Again, I’d love to see us provide our own housing. I’d also love a larger facility where we could function more like a community center with a living room. Next year, we’re looking to offer programming specifically for our seniors. It would be wonderful if we had a place for them to gather.

We would also love to partner with area medical providers to bring rapid-start [starting people on HIV meds the day they are diagnosed with HIV] to the county. We’re hopeful that the EtE [Ending the Epidemic] funding will help us do that. The county has already received some federal planning funds and has named an EtE coordinator for our area, and I think we’re forming an EtE task force.

TM: Can you tell us any stories that illustrate your work?

ML: A few years ago, after we received our rapid re-housing grant from the county, we had a couple, both living with HIV, whose home burned down. They lost everything, and they hadn’t had a lot to start with. So with those new additional funds, we were able to put them in a motel immediately, help them locate a new home, and help pay their rent for a year to make sure they were stable. We got them their HIV meds the same day too. So while their situation was still incredibly difficult, they didn’t have to worry about where they were going to sleep at night.

I also hear so many stories from our staff, especially the peer advocacy program. It’s been just the two of them to convince clients to take their meds and make their appointments. And these are with patients we weren’t able to reach for years, despite the best efforts of our case managers. The personal connection was missing, and that’s what’s worked.

TM: What do you do for self-care and joy?

ML: My niece and nephew! All anybody has to do is walk into my office to see exactly how much they mean to me. I have pictures of them and their artwork everywhere. They live in North Carolina, so we do lots of Facetime calls. It’s hard to have a bad day if they’re in it.

Positive POV: Wilburn Mitchell

We talked to Wilburn Mitchell, 39, an AOC peer advocate, who was diagnosed with HIV in 2012.

Wilburn Mitchell: I grew up in the Fort Worth area. I was into everything—a busybody! I wanted to know everything going on.

Tim Murphy: Did you have any sex ed growing up?

WM: Yes, but we didn’t talk about LGBTQ stuff or HIV—just the basics, like using birth control.

TM: So how did your diagnosis come about?

WM: Before the diagnosis, I was a store manager at Subway [sandwich shop] and in a seven-year relationship. I’m very family-oriented. I went to the hospital for an anxiety attack, because I had recently lost my brother, and they tested me there for HIV, and that’s when I found out I was HIV positive. I was shocked. Then I was scared—I wasn’t educated about HIV, and I felt like I wanted to die.

TM: Had you had any prior sense or knowledge of being at risk for HIV?

WM: No. I was always the type that wanted to be in a relationship. I was very monogamy-oriented. I think my then-partner gave HIV to me, but I don’t blame him. It was my responsibility also. I was naive and lost myself within the relationship.

TM: Did you and your partner ever discuss using condoms?

WM: We started out using condoms, but again, I thought we were monogamous, so we stopped. We never had a conversation about HIV. I felt like it couldn’t happen to me. I told my then-partner about my diagnosis, and we went to get him tested, and he was positive, and we broke down together.

TM: OK, so then what happened?

WM: I was referred to the department of health. I got tested five more times, because I thought it was a mistake, but it wasn’t. After that, I tried breaking the news to my parents, who I’m close to. I felt at first like I could pretty much deal with it myself, but it broke me down. So I told them, and they cried and said I should have known better. I said, “You’re right, but these are the cards I was dealt.”

At that moment, I knew I had to do something different, because the discrimination I deal with in my own household—my parents weren’t educated about it, so I had to get some materials to educate them.

So I went to an infectious disease clinic, where I was given a case manager, who referred me to AOC. I also started treatment right away, but now I’m not on meds, because I’m a nonprogressor, and my labs show that my CD4s and viral load are OK, even though my viral load might go up slightly.

TM: Has anyone told you that your immune system and long-term health might still benefit from treatment even if you are a natural nonprogressor?

WM: Yes, we talked about that. I’m married now, and we talked about U=U, too. I want to protect my husband. I think I’ll start meds within a year.

TM: So what happened when you went to AOC?

WM: I decided I needed counseling. I was newly diagnosed with HIV and had recently lost my brother. I wanted to talk to someone who didn’t know me and wouldn’t judge me. My first counselor, she was very compassionate and listened to me and helped me work out my issues. She’d ask: “Is that how you feel? You think that’s what you need to do?” It was a learning experience.

At first my sister was coming with me to AOC. It was new, and I was frightened, but after a month, I got comfortable and decided that counseling other people was something I wanted to do myself, because I don’t want anyone to experience what I’d experienced with my parents. So I asked AOC if they were hiring. They weren’t at the time, but I continued to get more education and more comfortable with myself. I felt like I needed time to get to know myself all over again. I got an actual job here in 2017.

TM: What do you do on a daily basis as a peer advocate?

WM: I get clients comfortable with themselves, educate them about HIV 101, go to appointments with them, help them educate their families, and build up their confidence.

TM: What do you make of the HIV situation in the Fort Worth area?

WM: I think it’s getting better, because they’re creating things like this peer program. If you’re newly diagnosed, if you have support from the beginning, it makes you stay in care more.

TM: So you married someone other than the man you were with when you were diagnosed?

WM: Yes, we got married a year ago. It’s someone I went to high school with who’s always been my friend and went through my HIV diagnosis and breakup with me, and then one night said to me, “OK, you’re single now. I’m not gonna let you get away. Will you marry me?”

TM: That’s sweet. What do you guys do for fun and self-care?

WM: We watch a lot of movies. We have two dogs. I’m a big video-game addict. Right now, I’m into this Michael Jackson dancing video game. The song comes on and it shows you the words and the moves, and my husband and I just go back and forth with each other.

TM: What do you make of your life’s journey so far?

WM: I feel like I’m gonna continue to work in this field, continue to educate. I don’t regret my diagnosis at all. I was diagnosed for a reason, and as many people as I can help, I will. We’re doing an advisory board here that I’m a part of. Who better to show the facilities here and help [people with HIV] deal better than us [fellow people with HIV]?