In the Bible Belt, Memphis HIV Advocates Work Against Religious Stigma, Poverty, and Miseducation
A Snapshot of Shelby County, Tennessee, a Target of the U.S. "Ending the HIV Epidemic" Plan
A Snapshot of Shelby County, Tennessee, a Target of the U.S. "Ending the HIV Epidemic" Plan
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 and seven states 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 Shelby County, Tennessee
Poverty and stigma drive HIV rates in Memphis among black men who have sex with men, but the undetectable equals untransmittable (U=U) message and more pre-exposure prophylaxis (PrEP) access may help turn the tide.
Need-to-Know Stats About HIV in Shelby County:
Memphis, Tennessee's largest urban area, makes up 37% of all HIV cases in the state and ranks eighth in the country when it comes to metropolitan areas with new HIV cases. Most diagnoses in 2017 were among those ages 15 to 34. It ranks second in poverty in U.S. metropolitan areas.
Of more than 7,500 people diagnosed with HIV in Memphis between 1998 and 2016, 69% were men and 85% were black.
Statewide, between 2013 and 2017, more than a quarter of newly diagnosed cisgender men were black men age 15 to 34 who have sex with men.
According to the county health department, rates of those living with HIV who are virally suppressed have risen from 33% in 2012 to 60% in 2017.
Successes and Challenges Facing HIV Service Providers in Shelby County
We spoke with Diane Duke, executive director of Friends For Life, a local HIV/AIDS services organization.
Diane Duke: I've been at FFL since 2016. I came from LA, where I was the executive director of the Free Speech Coalition, the trade association for the adult entertainment industry, where I started an HIV testing protocol for adult performers to be tested regularly. Before that, I worked for Planned Parenthood.
FFL started in 1985 as an AIDS hospice called Aloysius House, by a group of people who were watching their friends die. Then as people started living, it grew into something different and became FFL in 1990.
We don't provide medical services, but we do medical case management and other wraparound services that are really important in Memphis, which has such high poverty levels. We do transportation, mental health with both one-on-one and group counseling, and minimal substance counseling, which we work on with other agencies.
We realize that people living on the street have a hard time taking their meds, so we own two apartment complexes, one with 10 people and one with 16. We also do scatter-site housing where we lease units and sublet to clients, currently 22 of them. And we do short-term assistance on rent, mortgages, and utility bills when people are having financial emergencies.
We have a phenomenal food pantry, full of fresh meat, fruits, and vegetables and including a dietitian who does nutrition classes and teaches people how to cook the food in their bag and make it last. We have a Positive Living Center with computers, TVs, and classes on things like job readiness. The second and fourth Monday of every month, the staff serves dinner to the clients and we bring karaoke in, which is so fun.
We do a lot of work against HIV stigma, which is very high here. Coming from LA, I felt like I was stepping back into the 1980s. We still have people here who think you can get HIV from a toilet seat, and families who make HIV-positive members eat on the porch on Thanksgiving. They've heard that you can't get HIV that way, but for some reason they don't believe it.
We do a lot of outreach in churches -- this is the Bible Belt, after all. There's a church on every corner, and they're the size of coliseums. I was invited recently to a pastor's luncheon where I said, "If you're saying that all gay people go to hell and that HIV is the road to hell, then you're killing your own congregation."
And we're partnering with the University of Memphis to do a study on stigma in five different communities, to ask questions like, "What do you think of HIV?" and "Have you heard of PrEP?" We want to understand where the misinformation is coming from. We need to get an independent review board (IRB) on the study so it's publishable in national journals and to make sure it's replicable in different areas of the South.
Tim Murphy: What about on the prevention front?
DD: We have The Haven Center downtown, primarily for LGBTQ youth of color. It's really hip, with exposed brick, TVs, computer games, and a stage for shows -- but we also ask that visitors test for HIV and be open to education on HIV prevention.
As for PrEP, right now we have two navigators who help people get on PrEP -- in Memphis, nobody currently offers it for free. And there are still doctors in the area who don't know much if anything about PrEP, or they discourage you from it because they think it'll just make gay men more promiscuous -- which is exactly what they said about birth control!
So I'm very excited that, starting October 1, we are opening a PrEP clinic where you can come in, we'll test you for HIV, then if you're negative get you on PrEP and you walk out with your pills. Gilead is providing the pills, and we'll pay for labs through our 340B funds. It's one of the most instrumental things that FFL has done.
We're also going to do a lot more marketing around U=U. What I love about that campaign is that it helps take the shame out of being HIV positive.
TM: What about client and staff demographics?
DD: We have about 2,600 clients, about 62% male, 84% African American, a very small percent transgender. Our clientele reflects the county stats: About 5,200 African Americans living with HIV, 684 white people, 165 Latinx, 23 transgender, 1,976 women, and 4,468 men.
As for our staff of 48, I'm not HIV positive, but we have a number on staff who are. About 80% of the staff is African American, including the director of client services, and we have trans folks on staff too.
TM: How do you think you are doing overall?
DD: We're doing well when it comes to viral suppression, which is up in the 80% range for clients in our case management program. But we want to do better. We're trying to push viral suppression in our housing program, with cash lottery participation for those who show up to doctor's visits and know their viral load.
We've gotten a lot of people into housing and stabilized health-wise, but we've also had people who've died from AIDS-related illnesses, which is heartbreaking. Last year I attended four funerals. One was a suicide. I'm thrilled that the HIV community is focusing more on trauma, because our clients have experienced a significant amount of trauma. We've trained our staff about trauma and we provide them trauma services as well, because when you're hearing trauma day after day from your clients, that can be overwhelming. I've learned a lot since I've been here about poverty and the roots of inequity instilled for generations in the black community.
TM: Where are you frustrated?
DD: This is a very conservative, sex-negative community. It can be tough trying to talk about sexual health in a positive way. We've been censored a lot, anything paid for with government funds. We had to take down PSAs with eggplants [Ed: the usual emoji for penises] on them! We have to pass everything through the local county leadership. Once we were going to get limos to take people from one gay bar to another, and do education and testing in the limos, but the county shot that down. The point person said, "They'll never pay for gay people to ride around in limos," and she was right.
Still, our fundraisers are wildly gay. We've had more than 1,600 people come to our Big Gay Dance Parties -- and this is Memphis!
TM: Tell us some stories about your work.
DD: I had a client walk in the front door and ask, "Can you help me? My father found out I had HIV and just kicked me out." She'd walked in with her two daughters and two sons. She said that if she went into a shelter with her two daughters, she'd have to leave her two sons behind [because shelters are sex-segregated]. Their other choice was for them all to stay on the street. So we got them a hotel so they could all stay together, then helped them resolve their housing situation.
Here's another: After that pastor's lunch, a pastor showed up here with a congregation member who'd been living on the street and was so weak I don't know how he made it up the stairs. He had advanced AIDS. And we hooked him up to treatment and services. He's doing well now, in one of our apartments. My director of client services has stories like this every day.
We have one client, a woman, who stood outside the agency for days too scared to come in. When she finally did, she broke down crying, and the woman working at the front desk hugged her, and she said, "I haven't been touched in so long."
POSITIVE POV: James Sanderson
James Sanderson, 58, lives in Byhalia, Mississippi, just outside Memphis, and is FFL's early intervention specialist. He was diagnosed in 1998.
James Sanderson: I grew up in Chicago but left at 21 for Las Vegas to be a performer at the MGM Grand's "Jubilee!" in 1982. Suddenly, all my friends start dropping like flies, and I'm like, "What's going on?" I was sick for something else, and they called me and told me I was HIV positive. My reaction was a little bit nervous, because I didn't know much about HIV/AIDS and there wasn't much medicine out there. I went to a support group in Vegas, but they were acting like it was a death sentence, talking about what color they wanted their funeral caskets to be. I didn't want to hear that. I had things to do! So I got into care, but didn't go on medication until about 2000.
Then I came down to Mississippi to help family with some property issues, and I ended up staying. My Vegas friends told me it was a mistake, that it was very prejudiced in the South, but I said to myself, "God's gonna take care of me." I worked as a licensed esthetician at a department store in Memphis, got my HIV care at Regional One in Memphis, and drove nearly an hour to FFL as a client to get the food pantry. I saw barriers at both FFL and Regional One, which would make you wait a long time and be rude to transgender people. So when I came to work at FFL in 2010, I started going to doctor's appointments with my clients so that I was able to advocate for them. They're kinda behind here in the South.
TM: How would you describe the HIV situation in general in the Memphis area?
JS: It's a lot of young men and some transgender women too, coming in homeless and on meth. Most are black and a few are white. Some are couples and some come alone, coming in HIV positive and needing food, a place to stay, a drug treatment program.
I speak about U=U a lot. That shocks the young people, because they don't know that [being undetectable] can save you from going to jail [on charges of exposing someone to HIV sexually], so they're more open to both getting into care and also disclosing their status while dating. It makes them feel less shameful. I've talked about it at churches, colleges. I've been on the news about it twice.
TM: What are some stories that stand out for you?
JS: Around 2012, a woman brought in her son who'd been staying home to die. He was HIV positive, but he had other things going on, almost like cerebral palsy, with a limp and slurred speech. I told him I was HIV positive too, and that helped a lot with his depression, which he came out of. Later, his mom sent me a beautiful letter calling me an angel and a godsend.
More recently, a mother in her late 20s or early 30s came in with her five children. She was HIV positive but not in care or on treatment, and the kids were sick with pneumonia, with rattling coughs. So we started getting them all in care, helped her get a place to live with her children and furnished it with donated furniture.
TM: What are your goals for the next year?
JS: To see a lot more U=U promotion and to see a cure for HIV. I think we're close. I said to my mother, "Mom, you were around to see the first black president, and you're gonna live to see the first cure for HIV." I'm definitely a momma's boy! I go back all the time to Chicago to see her. She almost moved down here but stayed up there for her grandchildren.
So that's my life today. It's not as glamorous as Vegas, but we do good work here. We're not down here on planet Earth just to twiddle our fingers and toes.