Successes and Challenges Facing HIV Service Providers in Cuyahoga County
We talked with Lance Malone, manager of HIV services at Care Alliance Health Center in Cleveland.
Lance Malone: I’ve been in this job about eight months, two-and-a-half years total at Care Alliance. I was the supervisor of HIV prevention, the PrEP [pre-exposure prophylaxis] specialist, and the HIV testing counselor before that. I still do testing and education when I have the time. Before here, I volunteered at [HIV-specializing] Equitas Health in Columbus and at MetroHealth here in Cleveland, leading a support group for folks living with HIV. For income, I was doing retail, then I said to myself, “Why not get paid for doing what I love?” I’m pansexual—I’m attracted to both men and women.
Tim Murphy: Tell us about Care Alliance.
LM: We’re celebrating 35 years this November. We’re open to all, but we specialize in serving lower-income people living with HIV or experiencing homelessness. We have four clinics in the metro Cleveland area—two on the east side, one on the west, and one downtown. We’re in the areas that need our help the most, and you can come here regardless of your ability to pay. We attract mainly black men and women. We started as health care for the homeless population, but then started getting Ryan White [HIV] funding about 20 years ago.
Our annual budget is $15 million. It’s all federal, state, and local grants disbursed by the AIDS Funding Collaborative, a local agency. As for raising our own funds, we’ve done “Let’s Talk Turkey,” a Thanksgiving dinner event, in the past, and we’re starting it back up this year.
Our staff is about 130 people, at least 115 full-time. Part-timers include van drivers, care providers, psychiatrists. We’re at least 70% African American, probably 20% white, and 10% Latinx or other. We’re about 2% openly LGBTQ and zero percent openly living with HIV. There’s also no transgender people on staff. Our CMO and interim CEO is an African-American black man, our executive VP is an African-American black woman, our VP of nursing is a black woman, and our chief dental officer is [Middle Eastern].
As for clients, we have about 130 enrolled Ryan White clients, but with outreach and testing events, we probably touch more than 15,000 people. Of that group, I’d say more than half are African-American women. Of the 130 clients, about 60% are black women, 40% black men (probably 70% of those being men who have sex with men), and about 20% with an injection-drug-using history, but the majority have stopped using drugs now. We have only two transgender clients right now and no provider to do hormone therapy.
TM: Are other agencies in Cleveland more LGBTQ focused?
LM: MetroHealth has a Pride clinic, where we send our transgender clients when they need hormones.
TM: Who would you say is most affected by HIV in Cleveland?
LM: African-American men who have sex with men, and that includes heterosexually identifying men who “slip up” or have a “one-time encounter” with another man. My job is to help decrease suicide or suicide attempt rates among LGBTQ people. I have an HIV-positive support group, and we also do counseling, food resources, games, and activities. I try to keep people from committing suicide because they’re depressed or looked down upon. I’m trying to be a change agent.
TM: What is your gamut of services?
LM: We offer medical, dental, behavioral, a pharmacy, podiatry, physical therapy, and OB-GYN. We have two Ryan White care coordinators that can help you get food, shelter, or transportation, refer you to surgery, make sure you have health coverage.
TM: Tell us more about your support group for HIV-positive folks.
LM: That’s PCG, the Positive Change Group. It’s mostly MSM; only two women. It’s not just for Care Alliance clients but anyone in the county. I started it in October of last year; we meet twice a month. For major holidays, including World AIDS Day (Dec. 1), we try to celebrate those in our Ryan White program with a dinner, dancing, a DJ—all that good stuff.
TM: What would you say is the biggest factor perpetuating HIV in Cleveland?
LM: No one’s listening because no one’s talking. Not enough people are talking about HIV to encourage people to get tested and end the stigma. I’ve come across lots of people who don’t believe their child is sexually active. I was in a high school a few weeks ago, and students told me they were having three-ways, but I was doing sexual health 101 and students didn’t know how to use a condom, to check for the date on the package. They also didn’t know that it takes only one time having sex to get pregnant or get HIV or an STI. Many thought that HIV was transmitted through saliva, cups, or spoons. They’re not educated on U=U [undetectable equals untransmittable] or PrEP. This is also true of guys I’ve talked to in a transitional correctional facility, the last place they stay before they’re released.
TM: How is viral suppression going in Cleveland?
LM: I’d guesstimate that about 70% of our 130 HIV-positive clients are virally suppressed. If people are between jobs or homes, they’re not thinking about taking their medicine. It’s so sad, but that’s a very common story. We have an outreach team, and if there’s a known address, they’ll go there. But a lot of our clients have a phone one month, no phone the next. It’s a cat-and-mouse game. I try to tell them that we’re here to help, but we need to know your new phone number.
TM: What about Care Alliance and PrEP?
LM: We’re listed as a PrEP provider by the state. We don’t have an actual program, just two providers who can prescribe it. We try to promote it via social media and flyers we post in-clinic and distribute at events via our community engagement team.
TM: What are you most proud of in the past few years?
LM: Every three years, you have to reapply to get Ryan White funding to show that you are running your programs to government standards, and we’ve had that funding for 22 years, so we’re doing something right. Also, every January, we’re part of Cleveland’s Homeless Stand Down event that provides things like clothes and haircuts to more than 1,000 people experiencing homelessness.
We’ve also received two grants for vans the past few years, where we can pick you up and drop you off, and if you’re out of our van loop, we’ll send an Uber for you.
TM: Where do you feel challenged or stuck?
LM: Getting our clients to understand that they can always keep coming to us. A lot will come when they’re homeless or broke, but once we’ve gotten them on their feet [we often don’t see them again]. We have donuts and coffee in our lobby every week to make sure that people feel welcome. We put out surveys to answer any questions or concerns. We’ve upgraded the TVs in the lobby, and we’re going to have more community events, including a toy-wrapping party for the holidays.
TM: Where else do you feel stuck?
LM: We’re in an area with a lot of other federally qualified health centers [FQHCs] and nonprofits, including AIDS Healthcare Foundation (AHF), so it can feel competitive. We try to make sure that our patients here have a comprehensive care team, that you’ll see the same provider and nurse, etc., and you can’t necessarily say that about a place like the [massive] Cleveland Clinic. We offer intimacy, and we try to be collaborative with and refer out to other agencies.
TM: What would you do with more funding?
LM: Upgrade our facilities. We have one site that was free space, built in 2015, but the other three have been there over 10 years and need new chairs and other materials. We’re doing it, but it’s slow because of money.
TM: What are your goals in the years ahead?
LM: To reach more people than about 15,000, via more marketing. We’re on buses and social media, but I would like us to be on the radio and on dating apps, Facebook.
TM: Can you tell us a story that illustrates your work?
LM: We had a client who came in—24 years old, African American. He’d been on and off his meds and came in really depressed recently, having lost his job, then his car. He was crying. I had a counselor talk to him for a few hours, cheer him up, then I went in and had him explain what was going on, why he’d lost his job—and he appreciated that because I didn’t judge him, just listened. He doesn’t have much family or friend support and doesn’t like to put his business out there, so he bottles up a lot. So we got him back on his meds, and he’s working again, even if he doesn’t have his car back yet. The moral of the story is: Don’t judge a book by its cover, but really listen and do what you can do to help people and let them know that everything is going to be OK, that they’re entitled to down times.
Another story that really stuck to my heart: A female client, older lady. She’d fallen and hurt her hip, so her family decided she should be in a retirement home. But she was concerned about getting her HIV meds there. So I had a member of my team go out and meet with her, and we had a meds delivery set up, and now a member of my team goes there once a month to visit her and keep that connection alive.
Positive POV: Avery
We spoke with Avery [last name withheld], 33, of Cleveland Heights, Ohio, who is a full-time retail manager and was diagnosed with HIV in 2010.
Avery: I grew up in Cleveland and majored in early childhood education at the University of Akron. I was actually a teacher at a daycare center when I found out that I was HIV positive. I had an ex who called me at 1 a.m. and said, “You better get tested,” and I said, “For what?” but he said nothing and hung up. But I guess he meant for HIV or an STI, so I went to the city health center in Cleveland and tested HIV positive. I was speechless. What the heck just happened? This can’t be true. Why did I trust him? We never talked about HIV when we were together, even though it went through my mind. Later, this ex was telling people that he got HIV from me.
So I stood on the corner outside the clinic and called my best friend and cried. All I could think was, I can’t have children, I’m gonna be rejected. My friend said, “Oh God, this is crazy,” and offered support. I stayed in my room and cried for three days, then finally went back to work feeling very down, with my guard up.
Tim Murphy: Did you know there was effective HIV treatment to keep you healthy?
Avery: I said right away to the doctor who diagnosed me, “I want medicine right now,” so he put me on it and I stayed on it. Then I went to Atlanta to visit and decided to stay there and found a job and got more informed about HIV. I started reading up and got my care from AHF there and then met more HIV-positive people via the Evolution Project at AID Atlanta. Everyone there was very transparent and open about their status. I never told anyone in Cleveland about my status, especially my family, and I wasn’t ready to be open. But with the group in Atlanta, I actually said my status out loud when we went on an advocacy trip with the Black AIDS Institute to Fire Island in New York. I said it aloud to 400 strangers and did not get rejected, so I felt good about that.
I came back to Cleveland in 2015, when I lost my job in Atlanta. I’ve known Lance [Malone, at Care Alliance] for years, he’s like my little brother. He told me about the Positive Youth Leadership Summit, so I went in there a little cocky because of all the HIV info I already knew from Atlanta. I became a group leader, and I’m still one of the counselors and help create the summit every year.
TM: Did you ever tell your family your status?
Avery: I told my mom, grandmother, and cousin after four years. They just said, “Oh.” That was it. Nothing supportive, but also nothing negative. “Are you taking your medicine?” I said yes. I told my mom to watch the documentary The Last One, about the AIDS Memorial Quilt, and after she came back and said, “You good?” and that was it. I wanted them to be more supportive, but I also wanted to be not too concerned about their response, so...
Friends whom I’ve confided my status to have told other people about it, and I have had to tell them, close friends, that really hurt me.
TM: How much of a role does HIV play in your life now?
Avery: I do have moments when I forget to take my medicine, then I think, “How can I advocate for this when I’m not even sticking to it myself?” I’ve asked Lance to challenge me and ask me about this. I’ve volunteered in Lance’s department at Care Alliance, answering calls and putting together condom packages. I’m also a volunteer in the infectious disease unit at MetroHealth to offer support and conversation for people newly diagnosed with HIV.
TM: Do you know a lot of other HIV-positive folks?
Avery: Now, yes. I’ve met them at different support groups and functions.
TM: Has HIV affected your relationships and romantic life?
Avery: Sometimes I feel the rejection. I’ll ask people, “What would you think if someone had HIV?” I try to test them on it. “Oh, no, I wouldn’t have a problem with it.” “What if I were?” I’m not dating anyone currently, but I have since being diagnosed and it hasn’t been an issue. I had a conversation about U=U with someone I was dating, and they believed me and were relieved that I gave them a heads-up about my status. Sometimes I tell about my status after an encounter, but I try to do it before.
TM: Do you know a lot of guys on PrEP?
Avery: Not really. People will say they’re on it, but then when I ask them what med they take, they can’t answer, so I’m like, “OK.”
TM: How would you describe the HIV situation in Cleveland?
Avery: There’s not enough conversation and disclosure outside of certain centers or clinics. In Atlanta, there were billboards and lots of public conversations about HIV and PrEP, but not here unless you initiate it yourself. To end HIV in Cleveland, I think it’ll take transparency and people being authentic, not being worried about what other people think or say. And beating the stigma. If we can find a way to support each other and not be judgmental and try to be informed.
TM: What do you think is behind young men of color who have sex with men having the highest HIV rates in Cleveland?
Avery: It’s people trying to fit in and not really valuing themselves, not understanding that they are putting themselves in risky situations. People want to get more info about HIV once they have it, but what about before? Like me—I didn’t know much until it was too late.
TM: Do you think the city of Cleveland is doing enough?
Avery: Columbus is really open about HIV, because Equitas has really made an impact. MetroHealth here in Cleveland puts some effort out, but they’re not really effective until people are newly diagnosed. I don’t see much info for young people here in public spaces like bus shelters, whereas in Atlanta you couldn’t turn around without seeing something about HIV.
TM: Well, Avery, what do you make of your life’s journey so far, nearly a decade after your HIV diagnosis?
Avery: I still have a lot more to do. Having HIV doesn’t define me, because I’m still Avery and I can go ahead and mentor, spread information to beat the stigma.
TM: Is that your big goal in life?
Avery: I want to build a family and be that mentor, teach and care and support and not judge. I try to live by that.