In Central Ohio, Advocates Work to Correct HIV Misinformation and Structural Barriers to Care

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[https://www.thebody.com/article/the-united-states-says-itll-end-its-hiv-epidemic-were-watching]]. 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 Franklin County (Greater Columbus), Ohio

Reflecting the state, HIV rates in LGBTQ-friendly Columbus have been stuck for years. But Equitas Health, with its sites all over Ohio, aims to change that with innovative new ways of connecting queer and trans people and folks of color to PrEP and other tools.

Need-to-Know Stats About HIV in Franklin County (Greater Columbus), Ohio

• Franklin County has more than 5,200 people living with HIV—the largest such population of any county in Ohio, making up 22% of all people in the state living with HIV. Black people in the county have an HIV prevalence rate 2.7 times greater than whites.
• In 2017, there were 238 newly diagnosed cases of HIV in the county, with 69% of them among men reporting male-to-male sexual contact, and with rates among Blacks four times higher than among whites .
• The county had Ohio’s highest percentage of new HIV cases in 2018, 23%, followed by the counties containing Cincinnati and Cleveland.
• At the end of 2017, the viral suppression rate for the Ohio region containing Franklin County was 61%, higher than all but one of the 10 other such regions.
• Annual HIV diagnoses in the state of Ohio overall have remained flat the past several years among both men and women.

Successes and Challenges Facing HIV Service Providers in Franklin County

We talked to Dwayne Steward, director of prevention; Chad Braun, M.D., chief medical officer; Devin Quinn, senior prevention program manager; and Kelly Wesp, Ph.D., senior director of quality and evaluation, at Equitas Health.

Dwayne Steward: I’m from Columbus and have been in this role one and a half years, but I worked here back when we were called AIDS Resource Center of Ohio. For four years, I ran the HIV testing program funded by the CDC [U.S. Centers for Disease Control and Prevention] for Black and Latino gay men. Then I moved to Boston to work at Fenway Health as director of community affairs, then came back here for this role.

The agency’s been around about 30 years, but about 10 years ago, there was a merger of AIDS Resource Center of Ohio and the Columbus AIDS Task Force, which then merged with AIDS Resource Center of Dayton. Then in 2012, we moved into medical [services], providing care for patients living with HIV primarily through Ryan White funding.

Around 2014, we started talking about moving into PrEP [pre-exposure prophylaxis] uptake, which motivated the move to expand primary care to the entire LGBTQ community, or anybody needing a welcoming health care home. I think in 2016 we took the steps to become a federally qualified health center [FQHC] look-alike and increase primary-care services. At that time, we also rebranded to Equitas Health.

Our annual budget is around $85 million. We have 18 offices in 16 cities and towns throughout Ohio.

Devin Quinn: The majority of our sites provide services to people living with HIV, but we also have prevention services that link people with PrEP and other harm reduction tools. We also have a new pharmacy with a partnership with Dallas, Texas, and we currently have three medical centers with comprehensive wraparound services, one in Dayton and two in Columbus, with another opening next month in Cincinnati.

Kelly Wesp: Our total staff is about 425, which represents major growth the past several years. We’re 64% female, 36% male, 6% transgender or nonbinary; 68% white, 28% African American and 2% Hispanic; 45% LGBTQ. We don’t collect data on who’s living with HIV, but based on our insurance [and] pharmacy benefits, we employ a number of people living with HIV.

Client-wise, we serve about 2,000 people living with HIV, with well over 4,000 in our case management services. We’re rapidly approaching having about 1,600 patients who are transgender or gender non-conforming [TGNC]. We had about 1,300 PrEP clients in 2019. We HIV-test about 1,000 people across the state each month. And according to our CEO [chief executive officer], we probably touch around 50,000 lives a year in Ohio, West Virginia and northern Kentucky.

As for our success rates: Linkage to care is 100%, retention in care is 80% and viral suppression is 85%.

Tim Murphy: Great, thanks! What is your total gamut of services?

DS: I think we have one of the largest patient populations of people living with HIV in the state. We offer HIV and STI [sexually transmitted infection] testing at no cost.

Chad Braun: We do LGBTQ primary care, along with care for other underserved populations like diabetics and people suffering from depression. We offer HIV care, PrEP and PEP [post-exposure prophylaxis], transgender care, dental, behavior health including counseling and psychiatric. We’re starting a tele-PrEP program as well as walk-in PrEP service next month at no cost. We have a needle-exchange program that distributed more than 2 million syringes last year.

DQ: We also mail free at-home HIV test kits to Ohioans and will mail free condoms to anyone over 15. Last year alone we mailed out more than a million condoms.

DS: Our client services department is very expansive and includes a director of housing. We received new HOPWA [Housing Opportunities for Persons With AIDS funding] that expanded our housing, which includes rental assistance and housing placement via working with partner organizations in the community.

KW: We also use Ryan White funds for emergency housing and other assistance.

TM: How would you paint the current picture of HIV in the county and the state?

CB: Infection numbers have not changed appreciably in the last five years. But our PrEP uptake is on the upswing. Younger African-American men in the county are most impacted by HIV. The Latinx population here is not nearly as large as it is in other places.

DS: In central Ohio, we’re dealing with flat or increased HIV rates among young Black MSM [men who have sex with men], but in Akron, the hardest-hit population is Black people in general. We’re still seeing Black women [acquiring HIV] in the Akron and Cleveland area. And southern Ohio is really about the opioid epidemic and needle sharing.

TM: Is needle exchange robust in Ohio?

DS: Not like it should be. We have 20 different syringe exchange programs [SEPs] throughout the state, with one here in Columbus, but that’s only 20 SEPs for 88 counties and this epidemic is all over the state.

CB: When we started our Columbus SEP four or five years ago, it was entirely funded by the agency. Now we get a good amount of support from the city and the county, which fund everything except the actual needles, which is a bridge too far for them. We fund the needles out of our general funds. We might ask targeted donors to fund that. And we also have some flexibility with some of the money that we bring in through our medical centers that we could transfer to needles.

It’ll be interesting to see what happens [with needle exchange funding] at the state level. I don’t think it’s crazy to think that there could be more support.

DS: The Franklin County department of health also just received federal funding for it. Our state funding is also paying for our Narcan [naloxone, a lifesaving opioid overdose reversal medication] distribution program.

CB: We also now have a better relationship with the police around SEP. Initially they weren’t really supportive of it. For political reasons, about a year and a half ago, we had to change from being a “needle access” to a “needle exchange” program. It’s more limited now.

DS: Our own program allows people to get 10 needles, no questions asked; but after that, our funders require us to do a one-for-one dirty-to-clean exchange. It was a political issue locally. Unfortunately there were a lot of stories out there stigmatizing drug users, people finding needles on the street.

TM: Can you talk about successes you’re most proud of?

DQ: We have Mozaic, I think one of the country’s only drop-in centers for TGNC people. It serves a real need and has been really well received. We’re trying to not just medicalize HIV services but reach out at the community level, because people can be turned off by meeting with just a provider—which is why we offer a holistic approach with mental health.

Also, last year, the Ohio Department of Health gave us the majority of funding for a new program called PAPI, which stands for Program Access Prevention Interventions, which mirrors Ryan White in terms of how it works to identify folks who are HIV negative statewide and connect them to PrEP. So if you make less than $62,000, PAPI will pay for all your medical expenses related to PrEP, such as labs and insurance premiums, except for the meds themselves. So far, we’ve engaged more than 300 patients in that program alone statewide.

TM: How is PrEP uptake generally going in the Columbus area?

KW: In 2016, we were looking at a 48% retention rate on PrEP looking back two years from when people started. So we had our pharmacy start tracking the [re-]fill rate and put in additional supports, and within about a year and a half, we increased our retention rate to 68%. When we did a survey to investigate the drop-out rate, we found it was mostly related to cost of PrEP, or perception of the cost of PrEP, so we think that with the PAPI program, the rates will continue to improve.

CB: Our population on PrEP is mostly Caucasian and people with good access to care. So to try to increase uptake, we’re also offering no-cost, walk-in STI testing and using that to capture people’s interest in PrEP, catching them in the moment when they might be thinking about it.

DS: And with PAPI, we have folks whose main job is to educate in the community about PrEP. We partnered with the local department of health to do a series of focus groups statewide with primarily Black and Latinx gay men, asking how they preferred to be reached. And a lot of them said that they felt PrEP marketing was too sexualized and that they wanted the ads to be engaging not only them but their families and communities.

TM: What didn’t they like about sexual ads?

DS: They felt it was tokenizing, saying that all a Black gay man is about is sex. These were guys in their 20s and 30s, coming out earlier than in the past, and many said that they talked to their moms and aunts about these issues.

TM: Anything else you folks want to brag about?

CB: We’re proud that we’re the largest LGBTQ medical provider between the East Coast and Chicago. We’re by far the biggest trans health care provider in Ohio. The way we do transgender care here is called “goals of care,” where patients sit down with a provider and determine a direction. As soon as we started that program, the trans community was at our door saying that they didn’t have anywhere to go that treated them how they felt they deserved to be.

Our goal was to have nobody have to drive more than 75 miles to see a provider, as opposed to two and a half hours from Toledo, sleeping overnight in our parking lot to make a morning appointment.

DQ: Also, last year, we took under the Equitas umbrella the Buckeye Region Anti-Violence Organization (BRAVO) to serve folks in the LGBT community who are experiencing any kind of violence.

DS: And our educational arm does cultural-competency trainings around LGBTQ health care statewide.

TM: Has crystal meth use been a big driver of HIV or other STIs in the Columbus area, particularly among gay and bi men?

CB: It’s a huge problem for our people affected by HIV, and one of our biggest barriers to people staying in care and being virally suppressed. And there are scarce resources for it. We have a program called Tuesdays Without Tina, led by the head of our behavioral health department, which is basically a peer group session where patients can come in at any stage of where they are with crystal. We just ask that they don’t do drugs at the meeting. It’s a form of fellowship and it’s been very well attended. I think they had more than 30 people the last few sessions, and a few patients have reported that they find it helpful.

TM: OK, great. Now, where do you all feel frustrated, challenged or stuck?

DS: There’s still not enough services in Ohio when it comes to HIV or LGBT issues. I came from Boston, where there were four LGBT youth centers. There’s one in Columbus. We need way more of those around the state.

CB: I’m not a Ryan White expert, but I play one on TV. [laughs] And one of the frustrations I have is that Ryan White services sometimes don’t seem to be designed around the best way to reach patients. There’s lots of hoops to jump through. The amount of forms that need to be filled out, the fragmentation across different agencies, the lack of case managers to deal with new diagnoses, the lack of focus on linkage to and retention in care, the sheer number of people that [clients] have to meet with ...

TM: How many people does a newly diagnosed person have to meet with at Equitas?

CB: It’s funny you should mention that. Most of our new diagnoses are picked up by the Columbus department of health. So we have one person shepherd someone through their first three appointments in their first 90 days. We even have a cute little brochure with a “roadmap” on it. We came up with this on our own. And I think that’s why our retention-in-care rate is nearly 80%.

DS: When it comes to being inclusive and intentional about people of color and marginalized communities, I think we do well, but we could be doing better, and the field in general could do better. I think this [Trump administration] Ending the Epidemic funding will allow us to do some things differently when it comes to reaching those populations. The only way we’re going to end HIV is if we end broader health inequities, so we need a racial-justice framework.

TM: What would you do with major, unrestricted new money?

DQ: When it comes to addiction and substance use, I think we do a great job of connecting people with treatment. But where we fail is that we forget that relapse is part of recovery. We get folks sober, then say, “Good luck with the rest of your life!” I would like to see comprehensive new efforts to make sure that someone’s journey through recovery is successful.

TM: Can you folks share any stories to illustrate the work you do?

DS: Our Mozaic program is a walk-in center where you can get medical care. So we had a guy come in who was HIV positive and living in a tent with his partner behind his parents’ house because they were afraid of [contracting HIV from him]. There’s a big lack of HIV education in Franklin County. They didn’t want to share utensils with him. He was also dealing with mental health issues.

So one of our community outreach people met him at an event and got him to come to Mozaic. He’d actually been diagnosed with HIV a long time ago but thought he wasn’t sick anymore, thought he didn’t have it anymore. So within two days, we linked him back into care. And staff last week told me he’s still going to his appointments and meeting with our housing team. We’re also working to get his partner connected to PAPI so he can get on PrEP.

So I can’t stress enough the importance of community engagement. Sex ed is always the first thing in schools to get cut. If we hadn’t had our team on the ground in the first place, this individual would never have come back into care.

DQ: Part of my job is managing a grant called Statewide Initiatives, which oversees things like the HIV test mailing program as well as a hotline where people can call, text or chat with their sexual health questions. Yesterday I received a call from a nurse practitioner [NP] who worked at a very large business that does wellness checks for their employees. And the NP told me she’d had to give an employee an HIV-positive test result. So I walked her through the process. Later, she called to say that she wanted to link her clinic to our services to provide testing and education to her entire staff. So Dwayne is right about our community work being vital. I also go into high schools and provide comprehensive HIV 101 education on a semester basis.

Positive POV: Devin Quinn

We continued talking to Quinn, 30, born and raised in Columbus and diagnosed with HIV in 2012.

DQ: I was the youngest of my siblings. My mom is from Cuba and my dad was born and raised here in Columbus. I started going to Ohio State University [in Columbus] at 18, but I dropped out.

In high school, I had a friend whose mom worked for Equitas who was always reminding me about sexual health. So since I became sexually active young, I would get tested for HIV and other [STIs] every three to six months.

So in 2012, I took an HIV rapid test at the health department and I can’t remember what was said exactly, but for some reason I left thinking I was negative. But then my dad told me that someone from the city kept calling, wanting to talk to me. I thought it was about a parking ticket, so I called and it was actually a woman from the health department, who said, “Did you get your HIV test results?” And I said, “Yes, they were negative.” And she said, “Who told you that?”

Everything went white. I heard ringing in my ears. It was a gut punch. I said, “Are you saying I’m HIV positive?” She said, “I can’t tell you over the phone, but you need to come in.” And I said, “I’m not coming in until you tell me.” So she said, “Yes, it is—you need to come in.”

My friend drove me to the health department. My partner who I was with at the time also came and also tested positive. We’d had sex without condoms. They had known they were positive and not communicated that to me. I knew better, but I was young and free. We’d talked about the issue, but my understanding was that there was nothing to worry about.

TM: How long did your shock last?

DQ: About 20 minutes. I’m what you might call a Type A personality, I think from childhood trauma. I try to solve problems quickly. So I moved right into the action phase, to treatment and care, and never looked back.

TM: Who did you tell?

DQ: I told my parents and my sister pretty quickly. I had only recently come out formally to them as queer, and I had a moment of reflection, thinking, “If I’m going to be out about my sexuality, then I refuse to live in another closet based on my health status.” So I made a Facebook post about it.

TM: Wow. How was that received?

DQ: Generally very well. I have the privilege of having a really good support system. I was also raised by a woman who lived through the Cuban Revolution. So that’s taught me not to sweat the small stuff or care what other people think.

But I still had some uncomfortable dating experiences. I was rejected a few times. Someone said to me, “I know you can play safe with poz guys, but that still doesn’t make me comfortable.” I have a positive friend who says “Screw you” to people when he’s rejected. But I decided that if someone rejects me, I’m going to offer them the opportunity to talk openly about it, because I think they’re operating from a place of misunderstanding. The only way we’re going to end stigma is if we have more open conversations.

[Ed. note: HIV activists in Ohio, as in many states, are working to modernize an old state law that makes any case of someone with HIV not disclosing their status before sex a felony, even if they are on meds and undetectable.]

TM: Are you on the hookup apps like Scruff and Grindr?

DQ: Yes, and I very clearly disclose my status. I sometimes wonder if the lack of engagement I get on there is because of it. There’s still a lot of misinformation out there. Yesterday someone called the hotline and asked, “If I’m on PrEP [which prevents HIV exposure in the first place], do I need to get on PEP [which can prevent HIV acquisition after exposure]?” I said, “First of all, your doctor needs to explain to you what you’re taking.”

TM: How did you come to your current job at Equitas?

DQ: I was writing an occasional column on LGBTQ issues for a weekly publication when I was diagnosed, so I wrote my last column about it. It was seen by my case manager at the [then-called] AIDS Resource Center of Ohio, who said, “There aren’t a lot of young people of color speaking openly about their HIV story—would you be interested in working here?”

So I was invited to speak at a conference in the Dayton area for people living with HIV. I was on a panel with all suburban white women living with HIV, and there I am, a 22-year-old Hispanic kid from Columbus. But apparently I did OK, because I was then asked to speak on a radio show on [World AIDS Day], which led to my being invited to attend the Ohio AIDS Coalition’s yearly summit for young people living with HIV. And there I met a woman who was taking a group of those young people to Honduras to meet kids living with HIV, so I was invited. And after that I was hired by Nationwide Children’s Hospital as an HIV peer navigator.

That was my first real job, to meet with newly diagnosed people and walk them through the process. Clients would tell me things they wouldn’t tell their social worker or doctor. They’d give me updates about their progress. It was a very empowering and wonderful experience.

About two and a half years ago, I came to Equitas as a nonmedical case manager. Within eight months, I was promoted to a managerial role in prevention. And I’ve done all this without a college degree, but I’m currently going to community college part time at night.

TM: Ohio has had pretty flat HIV rates the past several years. What will it take to get to zero, or near zero, in the Columbus area?

DQ: I think we’re on the way there with the new PAPI program. In the Midwest, cultural attitudes around health and addressing structural racism are very intertwined. We have to get people to talk openly about their bodies and have honest conversations. We’re failing folks at an educational level. If we give young people the education, they’ll make healthy decisions down the line. It’s the only way we’re gonna get there.

TM: What do you do for self-care and joy?

DQ: I love jigsaw puzzles. I also just last year bought the house I’d been renting, so I’ve been renovating that from the ground up, which brings me joy. And I’ve also played the viola for 20 years now.