Successes and Challenges Facing HIV Service Providers in Travis County
We talked to Paul Scott, executive director of AIDS Services of Austin (ASA), who was diagnosed with HIV in 1989.
Paul Scott: I’ve been the E.D. here for almost 10 years. Before that, I was with Equality Texas, our statewide LGBT advocacy group, and with the Resource Center of Dallas, E.D. of their HIV program. Before that, I was with Chattanooga CARES in Tennessee. I started as a client and then joined the board as a client representative.
I was diagnosed with HIV in 1989, living in Chattanooga at the time and working as an attorney. My reaction to my diagnosis was resignation, because my then-partner had been diagnosed, so I figured I was probably positive, too. I remember [being sick while] seroconverting in December 1987. I was diagnosed with AIDS pretty quickly after my HIV diagnosis, and that was when everything caved in. I wanted to die, but that didn’t happen. But a few years later, my immune system got so bad. I had one opportunistic infection after another and was near death for over four years, down to 100 pounds and being fed via an IV in the hospital. Then the protease inhibitors came out. Six weeks later, I’d recovered so well I could travel to Hawaii and snorkel. I’ve been doing awesome, and my HIV has been undetectable ever since.
Tim Murphy: How do you think your personal experience has shaped you as an E.D.?
PS: The key thing I took away from it was the importance of treating people with respect and dignity, and as a whole person. [chokes up] I still get emotional about this. If it weren’t for those people who took a risk and literally touched me when nobody else would touch me—it made all the difference in my ability to survive. Having had to receive services myself has given me a stronger sense of empathy. I can put myself in the clients’ shoes.
TM: Cool. So what’s the history of ASA?
PS: We started in 1984 as Austin AIDS Project, a program of the Waterloo Counseling Center, which then became its own nonprofit, ASA, because the need was huge. Everything we did then was reactive—helping people as they were dying, going in and sitting with people who’d been abandoned by their families. There were also outreach activities like condom distribution, done by this group the Rubber Fairies, with tutus, crowns, and wands, passing out condoms in bars and giving information about safer sex. We also had a great volunteer group called the Octopus Club that would go and raise money for things that government grants would [not] cover, like client car repairs. They’ve raised more than $2.5 million over the past 22 years.
Then we moved into a more formalized structure, with case management. In 1992, we opened a dental clinic, because people with HIV were being refused dental care. In 1995, we had a large expansion of our prevention programming and started doing more comprehensive testing and outreach in the community. And finally last year, we opened our Moody Medical Clinic, a fully integrated care system with a focus on viral-load suppression.
TM: Very cool. Tell us more about the agency.
PS: Our annual budget going into 2020 is around $10 million, about 60% of that from government funding—a dependence that we’ve been working in recent years toward reducing. With the clinic, we’ve been able to move into insurance billing, as well as revenues we get from our 340B [a government program] pharmacy.
We have three sites: the main campus just north of the downtown area, an area with a high rate of people living with HIV, where the clinic and food bank are located; the dental clinic about two miles away; and our health promotion site on the East Side, a combination of HIV prevention, educating, and testing, including the largest [federally approved HIV prevention] Mpowerment program in the country, focusing on men who have sex with men (MSM) ages 18 to 28.
Our total staff is 96 people, with a makeup that reflects the clients and community. We’re 64% female, 57% people of color, including majority POC at the leadership level, at least 5% gender nonbinary. People who are living with HIV are represented in the staff at all levels.
We have about 9,300 clients total, including outreach and prevention, 1,400 to 1,500 of them HIV positive. The clients are 39% white, 38% Hispanic, and 15% Black, with a higher proportion of Black people among the HIV-positive clients.
TM: Cool. What is your gamut of services?
PS: We provide outreach and education in the community, then HIV and STI testing at our sites, as well as via our mobile van. We have a program, Q Austin, to engage young MSM and create a social community with positive conversations around sex woven in.
We do linkage to care for both positive and negative people, HIV treatment for positives, and access to PrEP [pre-exposure prophylaxis] for negatives. It’s all done in-house. We also have an early intervention team for clients newly diagnosed with HIV, to make sure they start meds in 24 to 72 hours and that they’re retained in care. We’re also part of a larger effort under the Fast-Track Cities initiative, in which we’re trying to get providers citywide to commit to linking people to care within 72 hours of diagnosis. We have three providers who’ve signed on so far.
Within Austin, we’re above 90% in terms of viral suppression—we have the highest success rate of any city in Texas. Within the agency, our rate is 85% to 89%. Our clients are very challenged in terms of their needs and medical stabilization.
We provide legal services and transportation services, including bus passes. We have an on-site food bank, where clients check in with a digital key fob that will also alert them that they’re due to have their labs done. We provide mental health services, including to people who are HIV negative and on PrEP. We help people pay their insurance premiums and copays.
TM: Texas is one of 14 states that have chosen not to expand Medicaid [under the Affordable Care Act] to raise the income limit for qualification from very poor to poor. What would be possible for you if it were expanded?
PS: It would be a significant change in terms of what we could do for medical care. And it would allow us to be more creative with our Ryan White [insurer of last resort for people living with HIV] dollars, to give more support for wraparound services.
TM: What about housing?
PS: We don’t do direct housing, but we have multiple programs in terms of assistance via funding from HOPWA, which we are the program sponsor for in Austin. We also have a program funded by the city of Austin where we can provide housing assistance for low-income people at risk of homelessness who are HIV negative and on PrEP and/or living with hepatitis C. We collaborate on this with 12 other agencies. It’s an incentive to get and stay on PrEP, and you can get case management with it, too. It came about because we were seeing a high rate of lower-income people who were telling us they needed housing.
Basically, we work with a local organization to help find housing, and our staff works with apartment finders to work with landlords and identify units in different complexes, then we pay the rent up to $3,000 a month. The average monthly rent in Austin now is $1,350 for a one-bedroom, but the monthly $3,000 max might cover rent in arrears. We have about $2 million in funds for that program, which will cover people for up to two years and is currently serving about 250 people a year.
TM: That’s a really cool and unique program. How would you describe the current HIV picture in Austin?
PS: New infections here are level, but Black folks have 2.5 to three times the HIV rate—and Hispanics two times the rate—of white people. The Hispanic rate is going up. Cases are concentrated across the city’s eastern crescent, which is heavily Black and Hispanic. And with the Hispanic population, 45% are diagnosed simultaneously with HIV and AIDS, which I think is related to stigma [which keeps people from being tested and treated earlier].
TM: Are you among the many agencies nationwide who have heard from immigrant clients that they are afraid to access services because they’ve heard about Trump’s proposal to withhold green cards from “public charge” immigrants who access government benefits?
PS: Yes. We’re in a heavily Hispanic area with a lot of undocumented people, and ICE [Immigration and Customs Enforcement] raids fairly consistently around here. We had an ICE takedown in our parking lot—not a client, but a community member. We had seven police cars pull into our parking lot with guns drawn, and I told them, “You can’t come onto our property like that.” But yes, people are fearful of coming in. We had to make “Know Your Rights” cards to give to clients and train staff on how to have conversations with the clients and patients. I think the fear has abated a little bit in Austin, because there weren’t as many ICE raids this past year as the ones prior.
TM: What successes have you had the past few years?
PS: Moving into our integrated care model to provide HIV primary care and PrEP. Also, moving our health promotions program to the East Side of Austin, where there’s the highest rates of HIV. It’s open to the community, who can come in and access the internet, work on their resumes. Our PillowTalk outreach workers also talk to street sex workers, give them safer-sex supply kits, and urge them to keep getting tested for HIV.
TM: Where do you feel most frustrated or challenged?
PS: Housing is the biggest challenge—and transportation. Where people live impacts access to care. It can take someone two hours to go two miles on a bus here. We have clients who walk across two highways in 110-degree heat. So we’re working on how to mobilize our services to meet clients where they are—literally. We want to develop a location in South Austin. But there’s a terrible housing shortfall in Austin. Getting all our clients housed is a challenge. Five or 10 years ago, the average one-bedroom rent was probably $800, and now it’s $1,350. It’s even a challenge for our employees.
TM: What would you do with funds from an unrestricted new source?
PS: We’d increase access points to our services, probably in East or South Austin, the primary care but also the dental, medical case management, and food banks. And making sure we’re maximizing access to PrEP.
TM: How is PrEP uptake and retention going in Austin?
PS: It’s very robust within the MSM community, including MSM communities of color, but lacking in other communities of color. We need to work on answering, “Why do I, as a heterosexual African-American or Latinx woman, need to be on this?” We just launched a billboard campaign in Spanish, specifically using Spanish female pronouns. We’re one of about four organizations in the city focusing on PrEP. The other challenge we’re all addressing is how to expand PrEP education to mainstream providers. In January 2020, we’ll be doing more education forums.
TM: Can you share stories that illustrate your work?
PS: We had a couple come in who were living in a U-Haul in our parking lot. The husband was HIV positive and not in care, and the woman was pregnant and wanted to be screened for PrEP. So we got him re-engaged in care, and she got on PrEP, and they were linked to a case manager for housing assistance and to get food from the food bank. And all this happened in eight hours.
More broadly, I think the key story now that’s exciting is now is our ability to, if someone tests positive, walk them right into our clinic and out with an HIV meds prescription. Years ago, we always asked, “Is someone ready?” to go on meds right away—and now we’re seeing that [starting right away] is critically important in terms of [long-term individual and community viral suppression] success.
TM: What will it take to close the gap in Austin to really end the epidemic?
PS: Understanding—and this is my pet peeve—that sexual health is part of one’s primary care. It pisses me off that that’s not a conversation that primary care providers are having with their patients. Providers need more education on this, which is why the state has an initiative around this. Also, we still have to expand access to HIV care here in order to retain people in care.
TM: What do you do for self-care and joy?
PS: I try to take care of myself with the elliptical machine and with long walks. I have a place out in Hill Country where I go for long walks with my dogs and husband. That house was the best mental health investment, in terms of my being able to continue to do this work. And I play piano—I’m a classical guy.
TM: Paul, what do you make of your life’s journey so far?
PS: It’s been unexpected. I was an attorney and very unhappy about it, and I’m very happy now. There’s a reason why HIV happened to me. Maybe that’s me trying to make [sense] of it, but it’s still something that transformed my life in a way that best fits my nature as a person, in terms of my being driven by working with people, getting to know people, and understanding and respecting their needs.
Positive POV: Bonnie Baco
We talked to Bonnie Baco, 47, of Austin. She is on disability, is an ASA client, and was diagnosed (“probably”) in 2012.
Bonnie Baco: I’m from New York and moved to Florida when I was 9. Later, I had a fiancé who didn’t tell me he was HIV positive, and he got sick and passed away the same year I came to Texas, which I think was 2011. My daughter was with my mom at the time. My fiancé and his family told me he had cancer, and I was too stupid to look into it.
When I moved to Texas, I ended up with someone who was very abusive, schizophrenic. We lived homeless for six years. The first year, I went to the hospital for a kidney infection, where they did my blood test and found out I was HIV positive. I’m almost certain it’s from my ex-fiancé.
Tim Murphy: What was your reaction to the diagnosis?
BB: That’s a hard question. I felt completely and totally alone, scared that if I told anybody I cared about, they would reject me. I didn’t know anything about HIV or how long I was going to live. I found out I had 33 T cells. But I found a wonderful doctor, then a wonderful caseworker from the department of health hooked me up with ASA—and since then, I’ve been on an upward spiral. They helped me get a place to live so I could get my daughter back. And I’m undetectable. So I can’t really complain.
TM: So you were still homeless when you first came to ASA, yes?
BB: Yes, I was living out in the woods. We had a really nice camp. I had a pet pig and a campfire, and I tried to make the best out of a bad situation. I was living out there with two male friends. Now I’m in a two-bedroom apartment with my daughter and a cat. I was amazingly blessed. Everyone here at ASA has gone out of their way from day one to help me. They knew how much it meant to me to get back my daughter, who is 16. I knew I had to get housing to do that, and as soon as I did, my daughter was right back with me.
TM: So what’s a typical day like for you now?
BB: I clean the house a lot. I have terrible anxiety, so it’s difficult for me to leave. I’m seeing a psychiatrist but am looking to switch to the ASA mental health program. At least I can try to get out of the house now. Being back in society after living in the woods was a scary transition. At least in the woods it was peaceful. But it was humiliating to have to beg on the street and to not have a home to raise my daughter in.
TM: How often do you go in to ASA?
BB: At least every other week—sometimes more. I come in for my food bank and to see my caseworkers. I’ve actually gotten the guts to join the Women’s Rising group to be around other HIV-positive women. I think I’ve been to six or seven sessions so far. It’s scary, but I can listen to other people and come out of my shell a bit. We joke around. I feel comfortable there, not like some kind of freak.
TM: That’s cool. What are your goals for the years ahead?
BB: To take care of my daughter as best I can. She has selective mutism, a disability. She doesn’t speak to anybody but me. So I’m trying to keep myself together, working to apply for disability, to give her the proper help. Also, I want to write my story from since I got to Texas, when my mom and fiancé both passed way, finding out about being HIV positive. I write pretty much every day. I have five or six journals with poems and songs in them. I do a lot of collages, too, which will be good keepsakes for my daughter.
TM: Are you dating or thinking about dating?
BB: There’s a guy who likes to come around and help fix things in my apartment and play Xbox. He’s pretty nice. I guess you could say that we’re currently dating. He knows about my HIV status, and he’s already taking PrEP.
TM: What do you make of your life’s journey so far?
BB: By the grace of God, I’m still here. There are so many other people who haven’t been able to find a place like ASA. I’m blessed. Maybe I did something good in a previous life. I feel a lot more confident.