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 Missouri
Urban black folks disproportionately carry the state’s HIV burden compared to their percentage of the population, but challenges persist in majority-white rural areas, where stigma reigns and information and services are sparse.
Need-To-Know Stats About HIV in Missouri:
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As of 2018, more than 13,000 Missourians were living with HIV, 44% black and 47% white—although the state itself is 80% white and 12% black.
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The vast majority of those living with HIV in the state are men who have sex with men (MSM).
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As of 2018, 85% of those diagnosed with HIV were linked to care within 90 days, but less than half were retained in care or virally suppressed.
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The highest number of cases is in greater St. Louis, then in greater Kansas City.
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Annual diagnoses statewide have jumped more than 10% in recent years, from 486 in 2013 to 517 in 2016.
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The Centers for Disease Control and Prevention (CDC) has also identified more than 13 counties at risk for an HIV or hepatitis C outbreak, many in the south central part of the state.
Successes and Challenges Facing HIV Service Providers in Missouri
We spoke to Derek Landes, director of prevention education and health-services coordination at Spectrum Health Care, an HIV prevention and primary care provider serving central Missouri.
Derek Landes: I’ve been in my role here about two years. I do a lot of different stuff, from overseeing our HIV and STI clinic to treatment (including giving HIV-positive diagnoses), to connecting people to treatment and other services, HIV and sexual health education to various middle and high schools and community groups, partnering with universities on data and research, specifically about barriers to care and prevention in rural communities. Prior to that, I was a drug counselor for 10 years, working with adolescents and running my own treatment program in Columbia.
Tim Murphy: Can you tell us a bit about the history and scope of the agency?
DL: We started as RAIN [Regional AIDS Interfaith Network] in 1992 in a church basement as a response to the stigma and lack of care in our community for people living with HIV/AIDS. We were basically doing hospice, end-of-life care. Then we started getting Ryan White funding, and about two years ago, we went from RAIN to Spectrum, because now we do a “spectrum” of services, including primary health care.
We represent 37 counties around mid-Missouri. Our headquarters is in the biggest city, Columbia, a university town with about 100,000 people, then Jefferson “Jeff” City, the state capital, is the next-biggest city. To the south, we touch the Ozarks, to the west the last edge of Kansas City, to the east the edge of St. Louis, then north all the way up to Nebraska. We’re mostly rural.
Client-wise, we hover around 400, I’d say half heterosexual (about 40% women) and half MSM, mostly white. Most HIV cases of color in the state are in St. Louis and Kansas City, which have their own agencies and significantly larger staffs and funding.
With our outreach, we reached last year nearly 4,000 individuals, with about 2,200 interactions in our testing clinic, which were 65% white, 30% without insurance, 12% were MSM, and 90% were under age 30. About 26% said they had used condoms with each sexual partner in the past year.
Staff-wise, the entire agency is about 25 or 30 people, both frontline clinic staff and behind-the-scenes, including one community health worker each in Fulton, Hannibal, and Springfield. We’re mostly white, reflecting the region, and pretty heavily LGBTQ, including some transgender staff. The executive director is openly gay. We’re about one hairdresser short of having a regular drag show in here.
Most of our funding is from Ryan White, but we’re good at being creative and making deals with drug companies and also fundraising for donations.
TM: So among your spectrum of services, including primary care, you also have a pre-exposure prophylaxis (PrEP) program within your prevention department, yes?
DL: Yes, we just started a PrEP program less than a year ago, with about 16 people enrolled at the moment. It’s under-enrolled. PrEP is still so new here that not a single person we’d interviewed during a study had heard of it, unless they’d moved here from some place like New Orleans. That went for the HIV-positive individuals as well. I haven’t seen a real PrEP campaign from the state, and lots of providers still don’t know about it. It feels like we’re five years behind. But prevention-wise, for 37 counties, it’s just me and my assistant.
TM: What is the HIV situation in the center of Missouri?
DL: I’d say most cases are white MSM age 19 to 25. Right now we’re in the middle of a big spike in cases; over the past month, I’ve had one or two diagnoses a week. A spike in syphilis here usually foreshadows a spike in HIV diagnoses.
TM: Are you seeing a lot of cases in injection-drug users (IDUs)?
DL: Interestingly, no. I think statewide we’ve seen only one HIV case from IDU, although we’ve seen high hep C rates in that group. [Ed.: A state bill aims to legalize needle-exchange programs that are already in place.] I think there’s a layer of HIV-positive IDUs in rural communities who we just can’t find. They don’t know they’re positive, and they end up spreading it until it shows up here in the city. Then we try to track it back, but we can’t.
TM: Why do you think HIV rates have risen in Missouri in recent years?
DL: That’s the million-dollar question. I think it’s partly that we are dealing with a risk group, young MSM, who’ve never seen the HIV crisis. One young man like that said recently he thought that “HIV was over.” Then there’s behavior: Among our diagnoses, 80% said they’d been drunk, and [only] 25% said they’d used condoms.
TM: Do you see high rates of crystal meth use among MSM who test positive?
DL: Meth in general is an issue out here. In our last study of HIV-positive folks, quite a few talked about meth being involved in their infections, but not just MSM. We don’t do substance treatment, but we work with partners.
TM: Is transportation a big issue for people in rural areas seeking various services?
DL: Absolutely, but so is stigma. In rural areas, not only stigma around sexual health and LGBT issues, but confidentiality as well is a really big concern. In a community of 600 people, it’s hard to get an anonymous HIV test.
TM: What interventions have you found work best for such a large rural area?
DL: That’s what we’re working on figuring out, especially how to use tech. There’s a statewide app called Show Me Condoms that shows places to get condoms or get tested. We’ve also been developing an educational video series right now for parents, which we’ve been developing in partnership with local school systems. It’s very values-neutral, just the facts and tips on having a conversation with your kids about your values and sex. I think that’ll be ready in a year. This is an area where the best sex ed that people have had is abstinence-only, and even that was considered too progressive and canceled in some places.
TM: Where have you had success? Bragging points?
DL: At Spectrum, we really meet our clients where they’re at—it’s one of the most fun, cool, comforting, accepting places I know in this entire region. Our executive director is the best interior decorator I’ve ever met. Our office looks cool. My office has condoms framed in shadow boxes. We even have a weird nook with a fireplace and a chandelier where we do blood-pressure screenings. We’re laid-back, and we like to joke.
We’ve been doing a lot with The ColumnBears, our local gay bear group, like HIV-testing toga parties or pre-event snacks. We serve young LGBT folks, who are some of the most fun, creative people on the planet.
Our condom distribution has been really successful. For a long time, we put condoms in buckets at places throughout the region, but then we started doing “Bag it Up” lunch bags filled with condoms, lube, educational materials, donated vibrators, and coupons for free cookies. We distributed them throughout the community, which is easier than having to grab condoms out of a bucket. We’ve also done a really good job engaging with the local colleges, from which we have a thriving population of interns and volunteers.
TM: Where do you feel most frustrated and stuck?
DL: Funding. Right now our funding covers testing only for very specific groups, like young MSM. We have to foot the bill for anyone our funding sources consider “low-risk,” such as women over 40 or heterosexual men.
TM: What would you do with more money?
DL: I want to see us develop actual brick-and-mortar centers in the counties we’re supposed to serve. These are counties that don’t have appropriate, affordable health care access in general, so we’ve talked about opening centers where we provide not only HIV and STI screening but standard flu shots, diabetes screens, etc. We also need more manpower. I need at least four more people working for me so I don’t have to overwork myself.
TM: Are you still dealing with cultural frustrations?
DL: A lot of stigma. But our biggest allies have been the LGBT community. Our local drag bar has been such a huge ally. But in rural communities, there are no safe LGBTQ spaces, so it makes it hard for us to make inroads.
TM: Do you have any stories about your work you can share?
DL: We have some heartbreakers. I had a client, a very religious gay white man, for whom church was a big part of his life, but when he was diagnosed with HIV and disclosed to his church for support, he was asked to leave. Not long ago, I had a client who, during his first Christmas at home after his diagnosis, his family made him sleep in a separate wing of the house on sheets they burned after. He had to use separate silverware and nobody was allowed to touch or hug him.
TM: Wow, that is right out of the 1980s. Do you have any happy stories?
DL: Yes. Richard’s Family in Fulton became the first LGBTQ center for all of Callaway County. We anticipated a lot of resistance, but the community really rallied. At Christmas, the community organizations all get their own Christmas tree, and the first year that Richard’s Family opened, they were invited to the tree event and given their own rainbow tree. It was heartwarming.
TM: What are your goals in the next few years?
DL: I want us to finish developing our video education curriculum, in which I can Skype in to answer questions. I’d also like us to open more access points for health care. Fulton is a pretty clear target right now, as well as Hannibal. We’re trying to see if we can get USDA grants to rehab old buildings for health purposes. I also want to remove fear about sex—it’s a part of life. People say over and over, “I don’t want to get HIV tested, because I’m scared, and it’s easier not to know.” We have to pull sexual health out of the shadows and make it part of health care.
I would also like to see an update of Missouri’s HIV laws, [in which HIV-positive people can face charges equal to those for second-degree murder, even if HIV is not transmitted]. Our staff has been having talks at the capitol about this. Currently, there’s no way for an HIV-positive person to defend themselves by saying that they were undetectable, used a condom, or had a verbal conversation about their status with their partner before sex. But the effort around reforming this in Missouri is slow.
Positive POV: Devin Hursey
We talked with Devin Hursey, 29, of Kansas City, who is an HIV peer educator at Truman Medical Center and a steering committee member of the U.S. PLHIV Caucus.
Devin Hursey: I was born and raised in Kansas City. It’s small-town-meets-big-city, right in the middle of the U.S. The Kansas City side of the state is a lot more midwestern than the St. Louis side, which is more southern. St. Louis is blacker. A lot of media is hyperbolic when it comes to Missouri racial dynamics. I think it’s much more livable than people realize, but we still struggle with positioning the right voices at the table. There’s a need here for black leadership—and for leadership among people living with HIV that goes beyond engaging other people living with HIV as patients on things like treatment adherence.
TM: How would you summarize the whole HIV situation in Missouri?
DH: It’s bureaucratic. The state health department has control of the funding and the responsibility of allocating funding to meet the needs of those most impacted, but often there isn’t an equitable focus on racial disparities—such as issues impacting black gay men. Instead, we’ll get general programming for gay men. It’s deracialized. There are very few programs specifically for gay black men. In Kansas City, we have only one group focusing on that, BlaqOut, of which I am a board member, but it’s an advocacy group, not an HIV services organization. It started with a mission to end HIV disparities among black gay men, but it’s evolved to address the safety concerns of all black LGBTQIA+ people in the Kansas City area.
And at the same time, we’re losing the Kansas City Anti-Violence Project [to combat violence against LGBTQ people]. They just lost their building.
TM: How’s the PrEP situation in Kansas City?
DH: It’s available, but promotion is lacking. There have been no awareness campaigns speaking to black gay men that I’ve seen. We should expect more from prevention-focused HIV/AIDS service organizations in the region, but we have people there who are really uncomfortable discussing race. BlaqOut has been talking about starting a campaign for a while, but there’s nothing firm, as far as I know. They’re a fairly new group—they started in 2016.
I’m also plugged into the Missouri HIV Justice Coalition’s work to modernize the state’s HIV criminalization laws. We’ve filed two bills in the previous legislative sessions—one that’s our ideal and one that’s more passable, with the goal of getting the passable version closer to the ideal version.
Our current law is dependent on whether [the HIV-positive] person can prove that they disclosed [their HIV status before having sex] and does not take into consideration condom use or being on HIV meds and hence undetectable and untransmittable. And it carries a penalty of up to 25 years. And it also says that the health department must provide the prosecution with surveillance data [such as proof of the defendant’s HIV diagnosis or DNA evidence to compare HIV phenotype against the plaintiff’s, if the plaintiff is HIV positive.] Our bill would strike that out.
TM: What is the story of your own diagnosis?
DH: I went to Morehouse College in Atlanta but came back to Kansas City to finish school, which was when I got a routine HIV test, as I had before, and tested positive. For me, it was far less traumatic than for most people, because I had already been volunteering in the HIV field in Atlanta and even advising the national HIV advocacy group [NASTAD].
So I felt like I was prepared for the results, ahead of the ball, because I had already had conversations about what to say to someone when they’re diagnosed with HIV. So when I called my best friend, she knew what to say to me. But I felt like my diagnosis was due to bureaucracy. My one thought was that, at one point, someone didn’t reach me, give me what I needed. I’d been in school and had heard about PrEP but didn’t know anything about accessing it. This was the fall of 2013 [a year after PrEP was approved by the Food and Drug Administration and came on the market].
TM: If you were working in HIV and knew how to prevent it, what do you mean when you say that the bureaucracy failed you?
DH: Yes, there’s a personal behavior element, but I knew that the risk of getting HIV for gay black men was extremely disproportionate. I didn’t see it as an individual failure, but I felt like somebody dropped the ball, and it was something I wanted to understand and improve. That’s what I focused on, that was my way of avoidance. But I feel the same way today.
TM: What was missing for you in terms of preventing your getting HIV?
DH: I’m talking about my risk of being exposed to HIV compared to the sexual networks of people in other demographics. I could have used housing support here and there. School caused me stress, and though I had access to mental health services at school, I was seeing a different counselor every time. At the time, I couldn’t describe [the breakdown in care], but I knew it was there and wanted to understand what it was.
TM: Are you talking about racism and racial disparities in the health care system in general?
DH: Oftentimes, yes, there is a racialized power dynamic that makes things challenging.
TM: There is so much discussion about how to reduce HIV rates in young gay black men. What do you think is the missing piece of the conversation?
DH: As far as the treatment cascade goes [percentage of people diagnosed versus entering into care versus retained in care versus virally suppressed], it’s around retention in care. That’s where we need an immediate intervention. We have to make sure that the right people with the right experience are part of that workforce in the health care system.
TM: So you think the answer lies more on the Treatment as Prevention [making sure HIV-positive people are undetectable, hence unable to transmit HIV] side than with keeping negative guys negative via things like PrEP?
DH: Absolutely. I’m not a big fan of biomedical interventions alone. There are also social solutions that have been proven to work—like housing, employment, and access to food.
TM: Five years later, how are you feeling about your HIV status?
DH: At this point, I’m starting to want to get back to the things I was interested in before I became obsessed with HIV. I like to draw. I’ve been a musician; I was in the marching band in college. I’m rediscovering things. I started a graphic design program recently at a community college, so that’s one step. I’ve been taking art classes here and there. But for the time being, HIV is my day job. I’m also a member of the CDC/HRSA Advisory Committee on HIV.
TM: How does being an HIV advocate sit with you?
DH: It’s a natural fit. I went to a historically black college [Morehouse] to become an engineer but ended up learning all about black male identity and gender dynamics. Somehow I ended up studying myself. So HIV advocacy fits with my interests regarding my identity.
TM: What would you like your life to be like in five years?
DH: I’d like to earn a master’s of public health degree. A relationship isn’t something I’ve prioritized. I think I need to get some other things in order first and live like an adult.