Indianapolis HIV Service Providers Persevere Amid Stigma and Lack of Funding
A Snapshot of Marion County, Indiana, 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 Marion County, Indiana
With Indiana's highest HIV prevalence rate, greater Indianapolis has made recent strides in treatment and prevention. But amid a highly conservative state, it still has a way to go.
Need-to-Know Stats About HIV in Marion County:
- Marion County is home to nearly 1 million people, and the rate of new diagnoses in 2017 was 25.3 per every 100,000, up from 20.5 in 2015.
- New diagnoses in Central Indiana, which includes Marion and the nine counties surrounding it, have climbed steadily from 1990 to 2015.
- Indianapolis was nearly 100 miles away from the notorious 2015 HIV outbreak among rural injection drug users that pushed then-governor, now Trump Vice President Mike Pence to reluctantly allow needle exchange.
Successes and Challenges Facing HIV Service Providers in Marion County
We spoke with Alan Witchey, president and CEO of the Damien Center, the state's largest HIV/AIDS services agency.
Alan Witchey: I worked here for six years in the 1990s before becoming CEO of AIDS Services Foundation Orange County in California for five or six years, then coming back here as CEO and president. [Witchey is HIV-negative.] Damien was named after Father Damien, a 19th-century priest who did a lot of work with people with leprosy, who were shunned. We were actually founded in 1987 by the Episcopal diocese and the Catholic archdiocese, which gave us our building the first many years. We were mostly volunteer-driven and helped people die with dignity in those times. The archdiocese ultimately asked us to leave because we could not in good conscience be silent about condoms, which the Catholic Church opposed. They'd actually do surprise visits, what we called "raids," to see if we had condoms out. So we agreed that only in so-called "confession," in a private meeting with clients, could we talk about condoms. Now we're in our own three-story brick building. Buying it caused an enormous financial burden on the agency that we barely survived, but now we're financially stable.
Tim Murphy: What does Damien offer?
AW: We're a comprehensive one-stop shop with a medical clinic offering mental health and addiction counseling. We have a robust team of case managers and care coordinators that work on both the medical and nonmedical side. We have a food pantry and nutrition services, a supportive housing department, and a program that works with clients who are falling out of care. We also do HIV and STI [sexually transmitted infections] testing, and we have a PrEP [pre-exposure prophylaxis] program with free drugs from Gilead.
We serve about 4,000 people annually, about 1,200 to 1,300 of them HIV positive. The rest we serve through testing and PrEP services. Our client base is 75% to 80% men who have sex with men (MSM), 20% female, and 2% transgender or nonbinary. It's about 50% African American [while the county itself is about 24% African American], 30% white, and 15% Hispanic. About 10% of the clients self-report as injection drug users.
TM: What about staff?
AW: Fifteen of our 61 staffers are people of color, and I would like to see more. We've hired about six or seven staff members in recent months who are transgender or nonbinary.
TM: And what about HIV rates in the county?
AW: There's been a very steady rise in infections between 1990 and 2015. Indiana is a very conservative state that isn't comfortable dealing with sexual issues, and the LGBTQ population is not prioritized, so we have reduced support and funding here. We run a PrEP campaign in the city, currently with about 24 billboards and bus signs promoting PrEP and about 300 PrEP clients.
TM: What about viral suppression?
AW: About 58% of our newly diagnosed clients go into care within 30 days, about 81% within 90 days. About half of those stay in care, and of those, about 73% maintain adherence and about 65% are virally suppressed. I wish those numbers were higher, but it's complicated.
TM: What are you most proud of in recent years?
AW: Our one-stop medical model, which we opened about three years ago, is really important, because when you refer people from one agency to another, only half follow through. For people who fall out of care, we do calls and home visits. Housing-wise, we also work with people experiencing homelessness in a way other agencies don't. We help people where they are and don't drug-test as a qualification for our scatter-site housing model. We don't have a city-run shelter system. All the shelters are faith-based and often struggle with our clients -- transgender and LGBTQ clients in particular -- so we work closely with them to get them housed ASAP and to keep them connected to care.
TM: Where would you put more funds if you got them?
AW: The hardest part is actually when new funds come in but there's not the capacity to manage them. We've had tremendous growth from our 2017 budget of $6 million to $8.5 million in 2018. It all goes into services, which is great, but managing the contracts, staff, and overhead on the facility are all things that are traditionally not included in our public funding from the state and county health departments. We do a whole range of private fundraising, from grants to individual planned giving to benefits like our Grande Masquerade in October and Dining Out for Life.
TM: Where are you most frustrated?
AW: I'd like to see more racial diversity on the staff. That's tough, because there's still a lot of stigma and judgment in black and Hispanic communities toward the people coming in our door. Our client population is increasingly complex. It's hard work, and every day, staff struggles with the trauma experienced by our clients, providing trauma-informed care.
TM: How is needle exchange going since the 2015 rural outbreak in Indiana?
AW: It's been a tough issue. Last summer, our city council finally approved needle exchange, and we just partnered with the county in implementing it. They park their van on our lot one day a week, because they want to get people diagnosed with HIV right into services. So that's good -- but also frustrating that it took so long. Indianapolis has the state's highest rate of not only HIV but hepatitis C, syphilis, and opioid overdose.
TM: How would you paint the Indianapolis picture overall?
AW: HIV rates here are higher than they need to be, and we have more people out of care than we should. We have more funding than before, but we still struggle with providing all the care we want, like oral health, psychiatric and addiction treatment. And there is a shortage of HIV providers in this region in general, so if a provider leaves, it's tough to find someone to replace them. Our clinic already has a three-to-four-month wait, and we could get patients in more quickly if we had a couple more providers. For an oral health appointment, the wait might be six to eight months.
If we had more money, we'd also be doing more testing out in the community, including for additional STIs, because funding for HIV testing is separate.
TM: Do you think the Trump federal money will come through?
AW: There's a lot of vagueness related to [Trump's promise] to give a total $291 million to HIV efforts in 48 hot-spot counties nationwide, including Marion. We heard a rumor that funding will be allocated, but we don't know how much or in what ways -- or with what limitations. We're told that some funding may come down through Ryan White Part A, some through CDC [Centers for Disease Control and Prevention], and some through SAMHSA [Substance Abuse and Mental Health Services Administration].
TM: Tell us a few stories that illustrate issues at Damien.
AW: We had a city shelter that was refusing to take one of our transgender female clients. They were demanding she go to the men's shelter, where she'd been previously assaulted. So we negotiated with the women's domestic violence shelter to get her a spot there, then we were able to rapidly get her her own apartment with special funding we have for trans clients.
Also recently, we had great success with someone who, in the same day, we diagnosed as positive, did the confirmation test, got them into our medical clinic, and started them on HIV meds from our on-site Walgreen's. It was amazing that we could take someone through that process all in one day.
POSITIVE POV: Todd Fuqua
Todd Fuqua, 51, is a freelance photographer based in Indianapolis. He was diagnosed in 2012.
Todd Fuqua: I found out I had HIV in 2012, when I was treated for second-stage syphilis and they tested me for HIV as well. I thought I might have HIV, actually. My CD4s were still high, but my viral load was through the roof. Dr. Steven Andrew Norris told me he thought I should get on HIV meds right away and that it was rare to catch HIV so early.
So I did so and was undetectable in nine months. I got to tell my mom that about a month before she died from a heart attack -- and that was coming full circle, because back in the '90s, she had said, "I think AIDS is God's judgment on homosexuals,'' and I had said to her, "So Mom, you're saying your God wants your son to die of AIDS?" She never said anything like that again.
The diagnosis was scary as fuck for me, even though I knew it wasn't a death sentence. I was probably up until 2 a.m. in my living room staring at the pills before I took them, because my doctor said that once I started, there was no going back. At least I had gotten into recovery in 2010, so I was in a much better place in my life. I was able to talk to people in my church and get support.
Having HIV has gone fairly smoothly for me. The biggest frustration has been that while I think Obamacare has been good overall, the health system we had before here in Indiana, called ICHIA, was less red tape. Since Obamacare, I've had to change my insurance once, sometimes twice a year. And I've had people at the Damien Center, where I am a client and now on the client advisory board, not fully appreciate how big a deal that is. I'm lucky that with my low income levels I've always been able to get everything covered for free. But it's not always easy to navigate.
I feel taken care of in Indy as a person living with HIV. I think the Damien Center is phenomenal and the HIV provider community here is pretty decent. Damien's really evolved over 25 years into a one-stop wraparound-care shop. A few years ago, you had to go elsewhere for your clinical care. I also go there for individual counseling and couples counseling with my husband, Brandon. I think Alan [Witchey], whom I've known since the '90s, is doing a great job re-engaging the organization. They reinstated the client advisory board as part of their new strategic plan. They just have to stabilize their staff turnover.
Once I was cautious about telling people about my status, but then I came out with it in the local paper for Damien's Dining Out for Life benefit, and that's been very freeing. I don't think I realized how traumatic the HIV diagnosis was. It's not a death sentence, but it's still a big deal, and I had to go through a grieving process. I appreciate life a lot more now. I would definitely tell newly diagnosed people to not freak out -- and to talk about it with other people they trust.