Successes and Challenges Facing HIV Service Providers in Greater Cincinnati
We spoke with Linda Seiter, executive director; Brent Hartke, associate director of case management services; and Tricia Bath, marketing director, at Caracole, the county's largest multiservice HIV/AIDS agency, which started in 1987 as a shelter for HIV-positive people experiencing homelessness.
Brent Hartke: Since we started Caracole, which means "shell" in Spanish, our budget has grown from $10,000 to almost $10 million, and we've added multiple housing programs and case management throughout the county and the region. Linda's been here 15 years, and I've been here eight.
Linda Seiter: We have Procter & Gamble and GE here. Cincinnati suffers from a certain degree of segregation and racial tension. The downtown area has revitalized with a lot of new residential development and displaced a lot of people. It's in gentrification mode, and we've seen a pretty big jump in rental prices, with an average one-bedroom currently about $800 to $850.
Tricia Bath: Historically, Cincinnati has been politically conservative, but during the last election cycle, you're seeing it trend blue because of younger folks revitalizing downtown -- the ones who used to leave and not come back until they wanted to start families. That's helping to make us a little more progressive.
BH: In 2018, we served 1,514 clients and HIV-tested about 2,000. We're actually up in infections -- 191 new diagnoses in 2017 versus 150 to 167 in prior years.
LS: There's a very clear and dramatic rise in infections among injection-drug users (IDUs). Our relatively new needle-exchange program has four sites. Hopefully, they will expand. Their hours are somewhat limited. People can also access clean syringes from pharmacies without a prescription. And with our department of health, we've been getting as much [of the overdose-prevention drug] Narcan out there as we can, as well as fentanyl strips [so drug users can screen their drugs for deadly fentanyl].
The whole premise of our organization is harm reduction. There are no qualifiers to our housing [such as testing clean for drug use]. We try to be as low-barrier as we can in all the services we provide.
BH: Our clientele is about 55% African American and 39% white, 76% male, 23% female, and 1% transgender. Just under 60% of all clients report man-on-man sex as their primary risk factor. But our newest cases are a split between IDUs -- mostly heroin, but now we're seeing more injection of crystal meth -- and young MSM [men who have sex with men] of color.
We have HIV prevention, housing, and case management under one roof, but we don't provide medical care directly, although there is a primary-care clinic at one of our sites. We have great infectious disease care providers here in town.
TM: What would you say your successes have been in recent years?
LS: Definitely supporting our local partners in establishing syringe exchange! Also, the federal department of Housing and Urban Development (HUD) now requires any community receiving their funding to have a coordinated entry program so that people are triaged into the right housing program. So whereas once people found us through doctors or friends, which was very hit-or-miss for people with HIV who were homeless or unstably housed, now it goes through our funder, and people with HIV are sent directly to us. So more than ever, high-need people are having better access to our services.
We also started a PrEP [pre-exposure prophylaxis] clinic on-site here, which is important because PrEP is underused here in Cincinnati. The care is funded by UC Health, a major hospital, and we get the drug through Gilead's patient assistance program.
BH: The Ohio state health department also just started to help, too. They'll help pay insurance premiums to make sure that people interested in PrEP have insurance coverage. But it's not the only PrEP point of entry, and we have a grant pending to expand PrEP access even more.
Another big win for us is that we just received an expanded Ryan White CARE Act grant to hire staff to work in a 20-county region in southwest Ohio, northern Kentucky, and Indiana to provide case management and provide intense harm reduction for IV drug users with or without HIV, introducing them to syringe exchange and other services they might need, such as primary care. Abstinence is not required.
And we have site-based housing started in 2018. The majority of clients who've come to live with us are actively using substances, particularly heroin, but there's no requirement to seek treatment. We've had one person so far go for inpatient treatment. We do encourage harm-reduction practices. We have a case manager on site who's available to provide transportation to syringe-exchange services, 12-step groups, medical appointments.
LS: Several clients there have actually stopped using heroin, if not alcohol or other drugs. They may say, "When I get my [benefits] check, all bets are off -- I'm going to get some crack." But at least they're not going to overdose and die, like with heroin. And that's harm reduction, right?
TM: Right. So where are there still needs?
LS: We need more marketing for PrEP. We use billboards and bus signs, but that's really expensive. Also community education: I think we have a great testing program, but we lack a [dedicated] community educator. We'd love to expand testing.
BH: I'd like to be able to expand a research initiative with our state health department, focused on engaging difficult-to-engage clients who fall out of care with their HIV provider. We receive referrals from a variety of sources, including infectious disease clinics, and we say to them, "What would help make your life more stable?" Housing stability is a big one, as well as attaining food, health insurance, and a source of income. So for a lot of clients, one thing we work on is helping them with applications for Medicaid and food assistance programs and, if they are HIV positive and eligible for housing programs, we assess and refer. Thankfully, our state's ADAP [AIDS Drug Assistance Program] picks up premiums on ACA (Obamacare) plans.
The other challenge is with African-American men. I think our prevention team has done a great job of identifying places where young African-American MSM hang out, engaging them in testing or conversations about how to reduce their risk. We do outreach on a variety of apps including Grindr, Scruff, and Jack'd. People can ask us a question via the app and set up a time to come in and get tested.
TM: What about engaging young MSM of color on the option of PrEP?
BH: That's been a real focus the past year. The University of Cincinnati is currently doing a PrEP study focused on young African-American men, so we've partnered with them to try to engage as many of those men as possible to join the study, in which case they get free access to PrEP and medical care while enrolled. I don't know the success rate yet.
LS: We also really need substance treatment on demand. It's like the '80s again here, with substance treatment offered on every street corner -- some good, some bad. But you still need a payer source, whether it's private insurance or Medicaid, which only some programs accept. [With opioid addiction at an all-time high in the region], there is still no absolutely low-barrier substance treatment on demand, here or anywhere in this country. There are very few detox beds available [on any given night]. [Presidential candidate Sen.] Elizabeth Warren came here last year and asked, "What is the [free treatment] model for HIV, and how can we apply it [to the opioid crisis]?"
Positive POV: Ron Ward
Ward, 50, was diagnosed with HIV in 2010. In 2013 he founded Restoration United, a nonprofit organization dedicated to substance use prevention and awareness. With his HIV and drug addiction both under control and his hepatitis C cleared, this Cincinnatian continues on his journey of self-discovery.
Ron Ward: I was born in Middletown, Ohio, and raised in Trenton, Ohio. I was sexually abused from the age of eight to 13 and bullied throughout my school years. I struggled with my sexual orientation in high school, asking, "Am I or am I not gay?" -- so I started isolating. That's become my core issue: isolation.
I ended up marrying a woman and had a great job as a social worker at a nursing home, but then after a flood in 2004, we realized that the foundation of our house was destroyed and would cost $30,000 to repair. So we lost the house, and I went into negative credit. I couldn't cope and started checking out mentally. I got addicted to porn, then drugs, then started hooking up with guys. Eventually, I got into crack, then meth, which made me numb. I couldn't feel any pain or sadness. I became extremely sexual, constantly hooking up. I was 130 pounds, wearing size 26 jeans, and I thought I looked hot, but in reality I was dying. I'd had some surgeries, so my wife and other people thought that was why I'd lost weight. Nobody wanted to believe I was using drugs.
TM: How did HIV come into the picture?
RW: In September of 2010, I admitted myself to the hospital for drug addiction, but they only put me on a mental health unit for 24 hours before sending me to medical, where I was for two weeks. Right before discharge, the doctor told me I had both HIV and hep C. I had 160 T cells, so actually it was an AIDS diagnosis. I'm still with my wife, and thankfully she did not get HIV or hep C, because when I was out there using and having sex, I isolated from her.
I wasn't surprised by the diagnoses, so at first I brushed them under the rug and focused on my recovery. Then I had a meltdown when I was told by my doctor at the time, Judith Feinberg who has since [become] a professor in West Virginia, that my HIV meds had stopped working. I became very suicidal. I've since switched meds, but I'm still not completely undetectable.
TM: What happened next?
RW: I overdosed on my antidepressants in 2013 and was in a coma for 13 days, also developed pneumonia. Two hospitals turned me away even though I said I was suicidal. They thought I was still in active addiction even though I told them I was three years clean by that point. I was in one hospital for four hours then discharged, another locked down for 72 hours. Nobody would listen when I said that what I really needed was support for my HIV -- they just focused on what they thought was my drug problem. When I was in the coma, they were ready to pull the plug on me, but my wife said, "No way."
So finally I came out of the coma, miraculously, and I was very mad that my mental health needs had not been met. I told the hospital that the psychiatrist who treated me needed to be fired. I then talked to Dr. Feinberg and she referred me to Caracole, where a case manager helped my wife and me find a place to live, supporting us with our rent for a year. They also gave me the support around my HIV that I needed. It took a huge boulder off my shoulders. I haven't been involved with Caracole recently, but they helped me tremendously when I needed it.
Now I go for my HIV care to Dr. Carl Fichtenbaum at UC Health Holmes Hospital, where they have HIV support groups. Treatment cleared my hep C in 2014.
TM: What's your life like today?
RW: I've since started a nonprofit called Restoration United to help individuals connect to addiction or HIV treatment. Currently a board runs it, because I'm doing a lot of self-care counseling to keep my anxiety at a minimum. I've had some relapses since getting clean where I will get high and have sex with multiple men. My relationship with my wife is a challenge, but stable. As for whether I'm straight or gay, I'm mostly attracted to men, and in some ways being HIV positive has given me permission to feel that way, but I don't know why we have to identify one way or the other. Currently, I'm trying to be celibate. I go to 12-step meetings. Also, I'm writing a book and hope to inspire people.
TM: What do you think about the state of HIV in general in Cincinnati?
RW: The biggest problem is meth, because when you do it, you're not practicing safe sex or paying attention [to] whether you're using clean needles. I'm very pro–needle exchange.
TM: How would you sum up the journey you've been on?
RW: It's been a roller-coaster ride! You have to break the silence and not be ashamed of who you are. I lived in shame long enough, being called a faggot. I'm still processing everything that happened to me with the sexual abuse and bullying. But we can't let our past define who we are.