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. 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 Alabama
Poor, religious, and rife with racial inequality, Alabama embodies the challenges of ending the epidemic in the Deep South, where rural areas and young black men who have sex with men carry the HIV burden.
Need-to-Know Stats About HIV in Alabama
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The number of new infections annually in Alabama has remained in the 600s for nearly 20 years.
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About 75% of cases among men are from male-to-male sexual contact; among women, 83% of cases are from heterosexual contact.
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There have been at least 200 deaths annually among people living with HIV (from any cause) between 1997 and 2017.
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Almost half of the roughly 14,000 Alabamians who know they have HIV are not on treatment, and an estimated 15% of those with HIV don't know they have it.
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African Americans make up 27% of the state population but 64% of those living with HIV and 70% of all new cases.
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Nearly 70% of all new HIV cases are from outside the Birmingham area, highlighting the high rates of rural cases in the state.
- Alabama is one of 14 states (mostly in the South) that have not adopted Medicaid expansion -- in a region that makes up 30% of the U.S. population but half of all HIV cases.
Successes and Challenges Facing HIV Service Providers in Alabama
We spoke with Kathie Hiers, CEO of AIDS Alabama, a statewide umbrella services and advocacy agency.
Kathie Hiers: I grew up a lesbian in a small town in the South. When the AIDS epidemic hit, all my friends started dying. I'll never forget 1985, sitting in a restaurant, and six of my gay male friends came in, and they'd just come back from Pensacola, Florida, where you could test anonymously. All six of them were positive -- and five of those six have been gone for a long time now.
Back then, I was running a construction company and making good money, but once the epidemic picked up, I couldn't stand it anymore, so I walked into the local AIDS agency and the woman hired me that day, and I've never looked back. I ran a small agency in Mobile, then I moved to Birmingham New Year's Eve 2001 to run AIDS Alabama (AA), which was started in 1986 by the eggheads at the University of Alabama home of pioneering HIV/AIDS doctor/researcher Michael Saag and the clergy.
AA has a statewide mission, which is unique. There are nine HIV agencies in Alabama, and when AA gets federal funds, like HOPWA [Housing Opportunities for Persons With AIDS], we share it with all of them, which is important in a state that has such a big rural area. We have a hub-and-spokes model, with all 67 counties in the state covered, about 17 of which we serve directly -- 12 in Mobile and five in Birmingham.
We have an annual budget of about $14 million and a staff of 115, about 85% black and about 40% to 50% black in a leadership position; about 15% to 20% people living with HIV; a slightly higher percentage than that LGBTQ; two transgender employees, and we're working on more; about eight to 10 Latinx employees, and five bilingual employees. We serve about 800 to 900 people living with HIV, and then we "touch" close to 100,000 a year through presentations, fairs, etc.
Tim Murphy: What's your gamut of services?
KH: For folks without HIV, we are an ACA [Affordable Care Act, also called Obamacare] enrollment navigation center; we've signed up 4.5% of the entire state population on ACA. Trump slashed that navigation money, and we've gone from $800,000 to $200,000 for that, which has been hard. We've had to lay off five of our nine navigators. We also have some non-HIV housing: We opened the first-ever transgender residence in Alabama about two and a half years ago, 10 long-term units, and we also have some housing for LGBTQ young people ages 17 to 24 that serves around 100 people.
This year, we opened a PrEP [pre-exposure prophylaxis] clinic. The night we opened, with no advertising, we signed up 10 people. I think we're gonna go like gangbusters; we have good access into communities of color because we hire gatekeepers from those communities. I also want to figure out how to afford to layer in treatment for hep C, STIs [sexually transmitted infections] -- and also hormone therapy for the trans population.
As for clients with HIV, our biggest service area is housing. We manage HOPWA money for Birmingham and for Alabama statewide, and we're the second-largest provider of homeless services in Birmingham. We have some substance-treatment residential programs and some outpatient programs, all certified by the Alabama Department of Health. We have the only facility in the state for people living with HIV and severe mental health issues, almost like a nursing home. We own about 100 units of permanent housing and a bit of transitional housing. Then we offer HOPWA-funded rental assistance and three HUD [Department of Housing and Urban Development]-funded apartment complexes.
We also use HOPWA funding for transportation, because transportation in the South stinks. We have one crapola bus system; people will miss appointments waiting for the bus. So we have six vans that run nonstop, getting people to and from medical and social-service appointments.
Then there's mental health. The famous 1917 clinic at the University of Alabama with Dr. Saag is fabulous, but the wait period there for psych services was six months, so we took a leap of faith and opened a small mental health clinic for clients with HIV and their families. We've already capped out with well over 200 patients. We're also doing a little telemedicine pilot to provide psych services to some of the rural areas of southern Alabama.
Another thing that makes us unusual is that we have a strong focus on advocacy. I believe that people living with HIV should have a very serious role in deciding how everything happens and learning to fight for themselves, so we have programs where we try to develop leadership. Folks we trained started a chapter of the Positive Women's Network here in Birmingham. We've also created a civic engagement department where we help people learn to organize to get their voting rights back, register to vote, take people to the polls.
We also have a big Latinx outreach arm and won an award for being the most trusted Latinx service provider in Birmingham. I didn't have much luck reaching that population until I hired Jean Hernandez, who wants to start a one-stop-shop Latinx center with legal assistance. The first thing she discovered was that we have no outreach to the Latinx futbol [soccer] community, so she tapped into that, about 1,500 guys, and we had a big HIV/AIDS information and services event with them.
TM: What about funding?
KH: Most is federal money from Ryan White and [CDC [Centers for Disease Control and Prevention]]. We have a big CDC grant that ends September of next year, and we're very worried about [what happens after that]. We do many things well, but private fundraising, giving parties, isn't one of them. We make about $30,000 from Dining Out for Life, about $10,000 from an art event, and about $5,000 from a food-truck event.
TM: How would you paint the HIV picture in Alabama overall?
KH: I think the most important stats are the mortality rates. A report from Duke University's Southern HIV/AIDS Strategy Initiative found that the Deep South states, including Alabama, have the highest mortality rates with HIV as an underlying cause. And 68% of all rural HIV cases are in the South. And the region has the highest rate of new diagnosis overall; the proportion of new cases among black men who have sex with men rose from 2008 to 2016; PrEP use rates were lowest; and the region receives $200 less per person with HIV in federal funds than other regions.
Anecdotally, every day I see young gay black men coming into the office sick because, maybe they knew they had HIV but they didn't do anything about it because they didn't want to disclose. A few years ago, we were getting ready to go to the Christmas party, and this young kid comes in so skinny. Tony [Christon-Walker, director of prevention and community partnerships; see Q&A below] skipped the party and took him to UAB [the 1917 Clinic] and got him all fixed up with housing -- and then he died. People should not be dying like that anymore.
The South is the perfect storm for HIV, so many factors that make it worse -- everything from the conservative policymakers and lack of access to health insurance and care, stupid schools that won't teach sexual health, more minorities in poverty than anywhere else. The Alabama population is majority white, minority black, but the HIV rates are the reverse. And then HIV stigma is the icing on this big, fat unhealthy cake we have down here.
TM: Is the narrative changing at all?
KH: The funding situation has improved over the years, but we're still getting less per person than elsewhere. And the situation with young black gay and bi men is awful. A few years ago we started a support group. You'd hear, "Hi, I'm Tyrone, I'm 16 and I was just diagnosed." The churches are still awful -- only a handful are supportive. So that's why we opened a PrEP clinic, because it's been mostly white gay guys getting PrEP while it's the young black guys who really need it. We have a drop-in center for young gay men of color, which was the perfect place to start the PrEP clinic. We have a party every week to watch the TV show Pose, and one night, we had Dyllón Burnside, who plays Ricky, pop in because he was in town for something, and everyone [went crazy].
The big barrier with PrEP is disclosure. A young black friend of mine said, "I don't want to take a pill every day and get labs done every three months [PrEP protocol] to keep from having to take a pill every day and get labs done every three months [HIV treatment protocol]." He ended up positive. I think that the long-acting injectable agents coming out for prevention will be huge game-changers for all the young guys who don't want people to know they're on meds -- not to mention on the treatment side, for all the people living with HIV who also deal with homelessness and substance use.
TM: How does viral suppression/undetectability look among your clients?
KH: We try to track it, but it's hard to to get the labs from the health department or the clinics because of HIPAA [patient confidentiality and privacy] issues. It's very frustrating.
TM: What would you brag about, accomplishment-wise?
KH: I'm most proud that we've developed a good bit of housing and programming for the LGBTQ community, especially the trans community. We've had folks coming in living on the street because they had nowhere to go, were doing sex work, haven't been able to get housing because of who they are, and we've been able to get folks stably housed and into medical care. Most of the trans population in the city are HIV positive and not always in care. One client, when she came she was skinny as a rail, not even 100 pounds, and we got her into housing and care and made sure she had food, and she's looking fantastic now.
TM: What's a sticking point in your progress?
KH: Stigma. Trying to get these young gay men of color in to test is so hard. We do better than any agency in Alabama, but we're still only reaching a very small percentage of that population.
TM: What are your upcoming goals?
KH: We're trying to start a drop-in services center and homeless shelter for LGBTQ youth. There's no youth homeless shelter in this city of 1.2 million people. We bought the land for the site for $250,000, but now we're being offered $500,000 for it. So that and the Latinx Center are two big projects we're working on right now.
TM: Any vivid stories that illustrate your work?
KH: So our facility for people with HIV and severe mental illness? I remember a guy who came in there in a wheelchair with total AIDS dementia, wasn't taking his HIV meds. His 85-year-old mother couldn't care for him anymore. We don't have directly observed therapy [watching people take their meds to make sure they take them] in there, but it's close, and once he'd been back on treatment for two, three months, with three meals a day, it was a miracle. He was out of his wheelchair, he had his mental acuity back, he gained 40 pounds and beat everyone playing cards in the common room, and within six months he got his first job in 10 years.
Here's another: In this facility, we do three meals a day and recently got a great dietitian and chef, who, the first day, made a beautiful salad with salmon on top, but the clients turned up their noses at it because they were so used to fried Southern food. But they gradually started to like the healthy food, to the point that once, when they had a choice to get fast food before an evening event or eat here, they chose to stay here.
TM: The South presents so many systematic underlying challenges to beating HIV: systemic racism, inequality, poverty, lack of health coverage access, extreme religiosity and homophobia, stigma, etc. Can the epidemic be beaten in the South if these underlying factors aren't improved?
KH: I don't think we'll be completely successful until we get Medicaid expansion. I think eventually all the states will, but in the meantime we have all these southern states that won't take a truckload of federal money because they have to put in 10%. It just infuriates me.
Positive POV: Tony Christon-Walker
Tony Christon-Walker of Birmingham is AIDS Alabama's director of prevention and community partnerships. He was diagnosed with HIV in 1993. (Listen to his podcasts here.)
Tony Christon-Walker: In 1993, when I was 26, the health department called to tell me that a sexual partner had tested positive for HIV and that I might want to get tested. So I did, and they told me it was positive and to get ready to die. I couldn't be mad, because I'd known what to do to protect myself, and I didn't always. I knew that my friends who were diagnosed were dying really fast, diagnosed in March and gone by November -- some even faster.
I stopped dreaming, felt like my life was over. I'd had plans to go back to school, but I prepared to die instead. I figured I'd catch a cold that winter and die, but I didn't. Second winter came, same thing. So I thought, "Maybe I'm not gonna die." So I worked in retail, got chicken pox, recovered like a normal person -- but around Christmas, I got shingles and I had pustules on my face. I had stayed off HIV meds up to that point, which I think saved my life, avoiding AZT, but now it was the 2000s and they had new meds, so I went on Atripla.
TM: Did those years of thinking you might die take a toll on you?
TCW: Not that I was aware of. I'm really good about self-care. I don't get depressed often. Five years ago, I was diagnosed with colon cancer. Even then, I didn't get depressed. I just knew I had to fight it. I did the treatment, and now I'm cancer-free. I'm pretty resilient. I live in a two-bedroom house with my husband, who works for Blue Cross -- we'll celebrate 10 years together this month -- and our 14-year-old son that we adopted. I have a 32-year-old son from earlier in my life, and three granddaughters.
TM: How did you get involved with AIDS Alabama?
TCW: I volunteered with them for a while, doing outreach and passing out flyers. I got this job in 2013. I'm in charge of anything that's prevention- or linkage-to-care-related. We test people and if they're positive, we get them into care, and if they're negative, we try to get them on PrEP.
TM: How's the new PrEP clinic going?
TCW: Really well. We were referring a lot of clients out for PrEP, but then we'd lose track of them, so we decided with our grant last year to do a trial PrEP clinic out of our safe space drop-in called the HUB. We have a doctor, nurse practitioner, and social worker. Between Gilead providing the drug, plus revenues we get from the 340B program, we can make sure people get PrEP almost totally for free.
TM: What are the biggest obstacles to PrEP uptake?
TCW: The original messages about PrEP always featured white men. And stereotypically gay men, effeminate. There's nothing wrong with that, but 60% of black men who have sex with men don't consider themselves to be gay. So we did a social media campaign featuring people from the African-American and Latinx diaspora talking about what their HIV-prevention method was, including cis and trans women and men.
Because we live in a state without Medicaid expansion, that 340B money we get is really important to us. I have issues with these national advocates speaking for everyone when it comes to things like making Truvada generic. Then the 340B money associated with PrEP that we get would go away. What works in New York does not work in Alabama. My people are living below the poverty line. We're not in this business for the money, but we need the money in order to keep going. Now that the FDA approved Descovy for PrEP, we can switch patients to Descovy and still get the 340B money.
Let's focus on the structural barriers that prevent people from being on PrEP. Even if Gilead gives you the meds for free, you still have to worry about things like stable housing, the lack of a living wage, dealing with stigma, institutionalized racism. These are the things people don't consider when they talk about low uptake of PrEP among gay black men. I'm tired of white men talking for us. It's amazing that people think their own experiences are universal. Look at who gets hired to do HIV prevention. Most people think, "I'll just hire someone -- their race or sexual orientation doesn't matter." That's not true, because those people don't know the community they're trying to reach, and people have a natural fear of strangers. You need someone you can identify with delivering the message.
TM: How would you paint the overall picture of HIV in Alabama?
TCW: It's not pretty. The people who need the most help are getting the least. With rural areas, even if you have HIV/AIDS agencies there, then you've still got the stigma of going to it. If you're at the health department in a small town in the southern rural counties here that we call the "black belt" -- Marengo, Hale, Perry, Dallas, Wilcox -- everyone knows there's something not right with you. HIV is a manageable disease now. There's no reason now to have clinics that just do HIV. There need to be more general federally qualified health centers. Yes, there are some HIV agencies that are becoming FQHCs, but they're not in our hardest-hit areas.
TM: You've had quite a life up to this point yourself. What do you make of it?
TCW: Now you're gonna make me cry. My life is like a gift that I have to share -- so everything I do is something around work. I know a lot of people say "self-care, self-care," but I love the work that I do because I'm proof of what happens when you take care of yourself. So I don't want people contracting HIV thinking they're gonna die. You know in The Matrix when you can take the blue pill or the red pill? If the blue pill gives me HIV and the red gives me cancer, I'd take the blue pill. I sometimes wake up in the middle of the night worried about cancer, but never about my HIV.
I also don't want our young people thinking that they have to contract HIV. There are so many narratives about how if you're a black gay man in the South, you have a one in two chance of getting HIV. Why not just tell people to go jump off a bridge? But until we can figure out what to do to remove these barriers to prevention, that is the narrative.
TM: How many of the barriers can be removed by HIV services alone, versus larger structural changes?
TCW: This is so much bigger than the HIV sector. The states most impacted by HIV are the same as the old Confederate slave states. What does that tell you? Even though we no longer have slavery, the vestiges are still there. We don't have the bandwidth to fight the structural issues that drive the epidemic here. All we can do is mitigate the damage.
TM: Anything else you want to say?
TCW: Yes. We live in the buckle of the Bible Belt here in Alabama. There are so many black people in particular who've been indoctrinated into a white-Jesus version of Christianity, a version that gets us to hate ourselves. When I say I'm a gay man living with HIV, I don't get the same sympathy from the church that a straight woman would get.
TM: You don't think the black church has evolved in the past 10, 20 years or so?
TCW: Not at all. There's not a big difference between the black church and the church in general. With the exception of supporting social programs, most southern blacks would probably be Republican. I don't think efforts [to change the black church's attitude toward LGBTQ people, sexuality, and HIV] have made a dent. Sure, we have churches here in Birmingham that say, "We're OK with the gays coming," but they won't marry us. So don't tell me your church is accepting. You're just tolerating us.