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 Washington, D.C.
The nation’s capital has driven down its HIV rates dramatically the past 13 years—but isn’t on track to end its epidemic anytime soon.
Need-to-Know Stats About HIV in Washington, D.C.
- As of 2018, more than 12,000 people were living with HIV in D.C.—about 1.8% of the population. Black men who have sex with men (MSM) made up the biggest percentage, at 27%, followed by Black heterosexual women (15%) and white MSM (13%). Half of D.C.’s total HIV population is now made up of people aged 50 or older.
- The number of newly diagnosed HIV cases in the District decreased to 360 cases in 2018, a decline of 49% from 721 cases in 2011—and a decline of 73% from 1,374 cases in 2007. However, last summer, D.C. health officials said that the city would not meet its goal of halving annual HIV infections by 2020.
- In 2018, Black and Latinx people with HIV exceeded 1% of their respective populations, with Blacks disproportionately impacted at 2.7%.
- In 2018, among people newly diagnosed with HIV, 57% were linked to medical care within seven days of diagnosis, and 84% within 30 days. Viral suppression among all people living with HIV in D.C. remained at 66% overall and 85% among people who remained engaged in care. Young people ages 0 to 19 and 20 to 24 had the lowest viral suppression rates, at 40.7% and 50.9%, respectively.
- In 2018, the city supported about 3,400 people to start pre-exposure prophylaxis (PrEP) to prevent HIV.
Successes and Challenges Facing HIV Service Providers in Washington, D.C.
We talked with DeMarc Hickson, Ph.D., executive director of Us Helping Us, People Into Living, which focuses on HIV prevention and services for D.C.’s African-American community.
DeMarc Hickson: I’ve been E.D. here since 2017. Before that, I was COO of the HIV services agency My Brother’s Keeper in Jackson, Mississippi, for nine years. I’m HIV negative, myself.
UHU was started in 1985 by Bishop Rainey Cheeks and incorporated as a nonprofit in 1988. Its mission was to provide support services for Black gay men who were acquiring HIV early in the epidemic. We had a six-week curriculum focusing on holistic treatments for the mind, body, and spirit, including acupuncture. You had to have a focus on living and a will to live to be part of the group. Now “People Into Living” is actually part of our name.
Since then, we’ve expanded into a variety of clinical and supportive services. We provide comprehensive sexual health screening based on sexual and related behaviors, including alcohol and drug use. We screen for HIV, as well as gonorrhea and chlamydia in three sites—throat, urethra, and rectum—and also syphilis and hepatitis C. We provide on-site STI treatment and hepatitis A and B vaccines. We’re looking to expand our screening to height and weight, blood pressure, lipid, kidney and liver function. We focus primarily on Black gay and bi men and Black transgender and cisgender women.
We also provide psychotherapy with licensed social workers as well as professional counselors who use LGBT- and trauma-informed approaches. We’re well known for offering CDC-approved behavioral interventions, from Many Men, Many Voices—which we’ve also adapted for Black trans women—to Healthy Relationships, to Popular Opinion Leader. We also host several out-of-town retreats in Maryland, Virginia, Pennsylvania, and New Jersey, which gives us an opportunity to get away and really focus.
We have two sites, one in D.C. and one in Prince George’s County. We have 26 staff, including several part-timers. We have a $3.4 million budget in 2020, up $600,000 from last year. It’s primarily CDC, Ryan White, and local health department money, with about a third from foundations and corporations. Out of our 26 staffers, 24 are African American and two are white. All but four staffers are gay or bi men, with one trans woman currently, and about eight folks who are openly HIV positive.
We screen about 2,500 individuals a year for HIV and STDs, see about 200 to 250 people through our prevention interventions, another 125 through case management, about 75 for PrEP. About 400 to 600 young MSM and trans folks access activities and events at our safe space, including game night, ballroom vogue practice, Sip ‘n’ Paint, and poetry night. Roughly, about 35% of all our clients are MSM of color, about 5% trans women, and about 40% cisgender women.
We hope to have primary care by late summer 2020. We’re in the process of bringing on additional clinical personnel.
Tim Murphy: How is PrEP going?
DH: We actually started providing PrEP last February, and we now have well over 75 active PrEP clients. We ask all our clients if they’ve heard about it, and we help them to understand their behavioral risk level, using a sex-positive approach. We have staff that’s reflective of the community who are on PrEP, so they’re able to share their own experiences with clients. We have a lot of clients who are college students still on their parents’ insurance.
TM: What percentage of everyone you tell about PrEP decides to go on it?
DH: I’d say about 5%, but then about 90% of those stick to it.
TM: Five percent seems low. Why do you think?
DH: People don’t often think they’re at risk for HIV, even though we tell them they are if they are testing positive for other STIs. There’s still the stigma factor. They’ll say they don’t want to take a pill every day and they’ll just start using condoms or get into a monogamous relationship instead. We have to really understand that PrEP is not for everybody, even if they seem like the ideal candidate.
TM: Do you have services for people living with HIV?
DH: We have about seven support groups for positive as well as negative people. We have status-neutral groups for men and trans women and groups just for positive folks, including ones for cisgender women, young Black gay men, and those over 50.
We also have a status-neutral clothing closet and food pantry in our Maryland office for young Black gay men and trans women, as well as emergency financial assistance—but we prioritize those who may have a situation that threatens their remaining in HIV care, or those who are doing survival sex work.
TM: Do you offer direct housing?
DH: No, but we provide emergency assistance, so we can help someone pay their security deposit or their rental arrears. We refer individuals elsewhere for housing counseling services. Being able to provide direct housing services is one of my goals, and we’ve had a few people who’ve approached us with housing opportunities at an affordable rate.
TM: How would you paint the current HIV picture in D.C.?
DH: Overall, the numbers are flat, about a quarter to a third of them being in Black MSM. We’re also seeing higher numbers among Black men in Prince George’s County, because they’re being priced out of D.C.
TM: Where do you feel you’ve had success in recent years?
DH: Reengaging the community into understanding that HIV is not going away, and also that there’s a rise in the area in STIs and that they’re a gateway to HIV acquisition. Also, helping to address stigma around HIV and really doing some novel social marketing work. We have ads running daily on the majority of Black and urban radio stations. In March, we’ll start having ads on local Latinx stations. For D.C. Black Pride in May, we’re gonna have a “PrEP for Pride” campaign where we’ll be giving out free “2-1-1” packets, in which you take two pills the day before sex, one the day of and one 24 hours after. There is research that shows this efficacy. We’ll have at least two mobile units going to the clubs, and we won’t give out these packets unless you test negative on an HIV rapid test. [Ed.: This interview was conducted before the COVID-19 crisis.]
TM: What do you think it will take to bring new HIV infections in D.C. to near-zero?
DH: Innovative approaches like 2-1-1, where we are reaching those most vulnerable.
TM: Where do you feel challenged or stuck?
DH: Remaining relevant in the community. Your message can’t always be the same. For a long time, UHU and other community agencies were only focused on testing, testing, testing. At a certain point, that becomes like the teacher in the Charlie Brown TV shows going, “Wanh wanh wanh”—nobody’s listening. We need to find different entry points, like, “Hey! Have you eaten today?” Then we can follow up with, “When was the last time you saw a doctor?” Then we’re meeting people where they are and addressing those social determinants.
TM: How much of a social determinant would you say housing is?
DH: With the recent gentrification here in D.C., probably at least 20% of our clients may have unstable housing, sleeping on a friend’s couch.
TM: Have you been seeing a lot of crystal meth use among Black gay MSM that is linked to HIV risk?
DH: Absolutely, we’ve seen that, and we are intentional in setting up our mobile units at the clubs where we know they are buying and selling crystal. We just received funding from the D.C. health department to do needle-exchange activities on our mobile unit, along with HIV testing and PrEP access.
TM: In working with Black trans women, are there special factors not shared with Black MSM?
DH: Much is similar, but their levels of trauma, sex work, and discrimination in terms of employment and educational opportunities are higher. We’re very intentional that our services for trans women are informed and led by trans women. Our transgender coordinator is identifying places that are trans-friendly and developing a resource guide. We also want to do a trans comprehensive-needs assessment, where we’ll have focus groups as well as surveys.
TM: What are sources of self-care and joy for you?
DH: I do a lot of gardening, different varieties of tomatoes, peppers, cucumbers, and eggplant. I make my own spaghetti sauce. I love to cook. I’m from South Carolina and grew up on a farm during the summer. I was also a latch-key kid, so I had to know how to cook for myself when I got home. I love breakfast any time of day. I cook spaghetti at least once a month, last time with shrimp. I do lasagna on special occasions when I invite friends over.
I also normally arrange an international trip annually. I’ve been looking at Bali, the Caribbean, Brazil, and Cameroon, maybe in conjunction with some kind of HIV-related work. I also like to do social outlets with other executive directors and researchers.
Positive POV: Ronald Shannon
We spoke to Ronald Shannon, 35, who is a nonmedical case manager at UHU and was diagnosed with HIV in 2008.
Ronald Shannon: I grew up a preacher’s son in Richmond, Virginia. I was very inquisitive, always reading and writing, into poetry and music. About 12 years ago, I had left Morgan State U. in Maryland and was working for a state agency in Richmond. I’d been dating someone and got an email from his ex, saying that he was HIV positive, and to be careful. The guy I was dating hadn’t told me he was positive. I was naive, so it took me a while to go get tested. We’d broken up by that point.
So I went to a private clinic in Richmond where I was sure I wouldn’t see anyone who knew my family. The nurse came in and just blurted out, “You’re HIV positive. Do you wanna pray?” I was so shocked that I laughed. Then she called in a Black male doctor and he led the prayer. Then they told me that I’d need to find a specialist, but they gave me no referral or linkage. It was actually my best friend who was already positive who took me to his doctor, and that’s how I found a doctor who was wonderful and still checks up on me to this day. She said she wanted me to start treatment right away but that the guidelines at the time didn’t recommend it.
I actually didn’t go on treatment for another two years, when I started feeling sick, but then I went into denial and started feeling better and went off it. I told myself, “I don’t have it, I’m good, I don’t need this.” I did not tell my parents about my diagnosis for four years. I’d told them I was gay when I was 15, and they didn’t reject me, but it was still rough, and it was a struggle in the house until I graduated from high school. They wouldn’t say things to my face, but they would say things about other gay people.
Anyway, I broke down at work one day because I didn’t know how to disclose my HIV status to someone I was dating. A coworker I was really close to heard me crying, and she ended up sitting with me while I told my parents. It went well.
So I went back on meds—for a while. I had a really hard time with treatment adherence. I struggled for years. I had a mental breakdown and wasn’t able to return to my job. I started driving Lyft and Uber to make money. Then over social media, I met another gay Black man who worked at an HIV agency who became my mentor. He had an outreach group and invited me to join. We’d go to different Prides and parties. He then referred me to the D.C. health department, and that’s how I got a job there as a health impact specialist, which gave me the training I needed about my illness and what I needed to do. I started being adherent because I felt like I couldn’t be out there in the field telling other guys to take their meds if I wasn’t.
So I started feeling better about my life, and a lot of things started coming together for me at that point. It was only two years ago that I was able to stand up in a roomful of people and say that I was HIV positive. But since then, I can’t shut up! I feel obligated to share my story, specifically to young gay Black men, to help them know that it gets better.
I got my current job at UHU last October. On a typical day, I take care of whatever issues with clients I have. I’ll check my email and voice messages from them. I’m also in charge of support groups here, including getting the facilitators and ordering the food. I was also able to secure a financial advisor for our clients, to help with employment. Dr. Hickson employs a holistic approach with clients, not just their meds or their housing.
I have one client in particular who is not adherent. Now he’s started to feel a little sick. He claims he’s naturally undetectable, but his labwork says otherwise. He wants to take a “natural” approach to his illness. He’s combative. I hope he’ll start meds, but to be honest, I don’t think he will. He’s adamant about not taking them. I draw that back to African Americans and conspiracy theories, which hold a lot of weight in our community. There’s a lot of medical mistrust because of Tuskegee.
That distrust seeps down into PrEP. That and the stigma of not wanting your parents to find out you’re gay because you have Truvada on their insurance or they find your bottles. And African-American women are afraid it will give their babies child defects if they go on PrEP. [Ed.: Several studies thus far have found that PrEP is safe for pregnant women and their babies.]
In terms of the past 12 years of my life since my diagnosis, I think everything that has happened to me has been necessary for me to be where I am today. I don’t regret anything. I’m extremely proud of where I am. Even just two or three years ago to now has been an amazing journey. I know that the pain I felt in my initial diagnosis was for the purpose of being able to share my experience with other people. I’ll tell clients that I am HIV positive if it will make them comfortable. I can see the weight lifting from them when I do. They think, “Hey, I can talk to this guy, and he’s not going to judge me.” I have an older client who’s never told anyone in his life that he’s positive, except his providers.
My main goal in life is to continue to be more of an advocate and visible in spaces where young Black men, gay or straight, need someone to look up to. I’ve actually found a career that I love, in which I’m not only able to get paid but to give back. I’m working on my speaking career. As for continuing with my education, I’m not sure yet but I’m thinking about it. I’m pretty sure that that’s what Dr. Hickson would like me to do.
As for joy and self-care, the second I get home, I tell Alexa to turn on music—’90s R&B and gospel, Brandy, Monica, Toni Braxton, Deborah Cox. I still definitely enjoy writing. I’m an avid reader. I have my support system, my “sisters,” who I hang out with, eat with, go to museums with. And I definitely have my nights where I pamper myself with music, a glass of wine, candles, a bath, and a facial.