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 Duval County (greater Jacksonville), Florida
Deep South stigma and a slow uptake of prevention tools like syringe exchange have kept the northern Florida area from pushing down its HIV rates, especially in gay and bisexual men of color.
Need-to-Know Stats About HIV in Duval County, Florida:
As of 2017, greater Jacksonville had the ninth-highest rate of new HIV diagnoses in the country.
Of the 1.3 million people in greater Jacksonville, about 7,250 are living with HIV—65% Black, 27% white, and 5.6% Latinx. (The area overall is 65% white, 22% Black, and 7% Latinx.) About 66% of those in the area living with HIV are male—and 63% of those got HIV via male-to-male sexual contact.
New HIV cases annually between 2013 and 2017 remained in the low- to mid-300s.
The county had the third-highest rates of new HIV cases in Florida.
In 2015, 73% of county high schoolers said they learned about preventing HIV in school, which is below the national average of 85%.
Successes and Challenges Facing HIV Service Providers in Duval County
We spoke to Donna Fuchs, executive director with Northeast Florida AIDS Network (NFAN).
Donna Fuchs: I’ve been in this role 13 years, but here at NFAN 22 years. I started out as a volunteer when I found out in 1998 that my brother was HIV positive and I had no idea what to do for him. I had just retired from the Navy and was enrolled at the Art Institute of Fort Lauderdale in their culinary program. We almost lost my brother because he was not taking his meds, but he’s still alive, and now he’s my poster boy for taking your meds.
The agency just had our 30th anniversary. We started in 1989. The city of Jacksonville (JAX) did an annual study on issues affecting citizens and determined that JAX had a problem. Out of that NFAN was born. We became the first agency in northeast Florida to receive Ryan White dollars. We serve a five-county area. At first, NFAN controlled all the HIV/AIDS money for the other agencies, then we were told by the city that we could either control the money or provide clients services, not both, so we turned control of the Ryan White money over to other agencies and chose to provide services.
Our annual budget is more than $2 million, mostly from Ryan White and HOPWA. We have a staff of 17. Five of us have been here more than 10 years. We’re 36% openly living with HIV, 20% African American, 20% Hispanic, 64% female, 36% male, and 42% identifying as gay or lesbian. Currently, we have no transgender people on staff. As for leadership ranks, two of us are white females, and one of us is a gay Hispanic man.
As for clients, we only serve people living with HIV. We’ll serve 1,700 this year through all our programs, but we directly case-manage 350 to 400 clients. They’re majority Black, with men who have sex with men [MSM] around 35% of them.
Tim Murphy: Cool. What is your gamut of services?
DF: We have Ryan White case management, care navigators, and both short-term housing assistance (rent, mortgage, and utility) and a permanent housing program. We refer and link to other agencies, including CAN Community Health clinic, AHF [AIDS Healthcare Foundation], and the county health department.
We have a food pantry and an assortment of smaller programs like pastoral care. We’re getting ready to start a yoga program. We provide transportation under Ryan White, but we refer out for mental health or substance use treatment. We work well with other HIV/AIDS and sexual health agencies, including APEL and JASMYN, and don’t see the need to duplicate services.
TM: How is PrEP [pre-exposure prophylaxis] going in the area?
DF: I don’t know, because we’re not the ones providing the service and we don’t collect the data, but the DOH [department of health] here is really pushing it. They and AHF are the PrEP providers.
TM: How would you paint the HIV picture in greater Jacksonville?
DF: We’re seeing an increase in HIV cases in my agency in young MSM over the last 18 months, both white and of color. Several agencies, including ours, have waiting lists for case management. So the HIV numbers are not going down here.
TM: Why do you think?
DF: We’re in the Bible Belt, so stigma is very thick here. I’ve always said that there are five things you don’t want to be in JAX: Black, poor, gay, uneducated, or HIV positive. It’s getting easier to break into the public schools [to do sex ed], but it’s still hard. By law in Florida, abstinence has to be touted as a prevention tool. The DOH has managed to get small [sexual health] clinics in some of the high schools.
TM: Is it true that the JAX area is more like the Deep South than the rest of Florida?
DF: Yes. Some people call us southern Georgia. I wear a red ribbon shirt every day, everywhere I go. Some people say to me, “Oh my gosh, my cousin died of AIDS, God bless you for what you do.” But I’ve always heard, “Aren’t you afraid of catching it?” And I try to get enough time to educate them, but usually they don’t want to give you that much time. We also do the [multi-city] Dining Out for Life fundraiser [for HIV agencies]. Denver gets 300 restaurants on board for the event, and we get 20.
TM: Is there an increase in HIV cases among injection-drug users because of the national opioid epidemic?
DF: I’m not aware of it. We’re always the highest city in the state for STIs. And the city doesn’t even want to talk about needle exchange—there’s none around here I’m aware of. [Ed.: Needle exchange only became legal in Florida in 2019.] When I first came to NFAN, this was a big issue and caused us a lot of grief, so we just stopped trying [to get a needle-exchange going] and it’s never been brought up again. But I also don’t have the impression that there’s a large IDU population here.
TM: Where have you had the most success?
DF: It would all be within the agency. Our Dining Out for Life effort has grown. The first year we did it, we made $80, and last year we made $35,000—even though other agencies nationally made around $400,000. We now have a nutrition program that I spent 10 years developing with Dr. Lauri Wright at the University of North Florida, collecting data and applying for small grants. We hold very successful nutrition classes on things like how do you eat healthy out of a food pantry, how do you use your SNAP [food stamp benefits] wisely to get the best things for your buck? We’ve made pumpkin chili with canned pumpkin. In June, we’ll have a full-time licensed dietitian on staff.
I also have the most incredible staff. They get along so well and are so passionate and want to save the world. They will do backflips to help someone.
TM: Where do you feel stuck or challenged?
DF: The amount of paperwork we have to do holds us back. They’re always adding new requirements that take time away from helping people. I just had to turn in a 150-page year-three renewal for a grant I was approved for two years ago.
And again, the stigma is very hard. Nobody supports this effort. We had World AIDS Day events for five days in a row, and our mayor didn’t show up for one of them. There are good agencies here, but we’re not getting any help from city hall. The Baptist Church has a stranglehold on JAX, and the mayor is part of that. At least we have wonderful media partners like our spokespeople at the CBS and the Fox affiliates, and the Channel 4 weatherman is supportive of everything we do.
Our Latino community is also hard to reach. I’m sure some are worried that we’ll turn them in to Immigration and Customs Enforcement [ICE]. We try to make clear to them that we’re not allowed to do that.
TM: What would be good ways of reaching that community?
DF: We did Hispanic outreach for a couple of years, then the funding dried up. You need that person who can go into any area. We need the churches to get behind us. Some have, but not many.
TM: What would you do with unrestricted new funding?
DF: I’d put more education out there. We’ve never done a PSA poster campaign. I’d love to put something on the side of a bus saying, “Go get tested. Get out of the ’80s. Treatment is available, and you can have a normal healthy life.” I’d want to hire a marketing director, someone who knows how to message to diverse groups.
TM: Can you share any stories that illustrate your work?
DF: We have a couple with three kids, a husband who is HIV positive, and a wife who is not, who’ve been coming here for services for 20 years. We’ve paid their health insurance premiums for many years when the going gets rough, and they talk about what our agency has meant to them.
TM: What do you do for self-care and joy?
DF: Jigsaw puzzles. I can sit and do one for hours and solve all the world’s problems while I’m doing it. I just started a 4,000-piece puzzle. I spent 20 years traveling in the Navy, so I’m a homebody now. I love to cook. I love the sitcom Mom on CBS. It’s taken the stigma away from being an alcoholic and a drug addict.
TM: What do you think it’ll take to end the epidemic in the JAX area?
DF: We need to make testing routine, and I haven’t heard of any such push. We need to get past the stigma of HIV and teach how to prevent it in schools. Can you imagine if we knew how to prevent the common cold? It’d be in every classroom.
Positive POV: Dante
We spoke to Dante (last name withheld), 34, of Jacksonville, who is a HOPWA case manager at NFAN and was diagnosed with HIV in 2014.
Dante: I was born in Atlanta, but we moved here when I was in middle school. Growing up, I was very shy, same as now, not liking to be the center of attention. I finished high school and started college but didn’t finish. Before NFAN, I worked for Chase bank for five years in IT, then as a mortgage writer, which was very stressful, because at Chase one mistake could cost you your job.
So when I was in high school, around 2002, I went to get tested for HIV with my best friend, and his test came back positive. He died in 2009. I assume it was AIDS. He wouldn’t take his medicine. I’d try to get it for him, and he’d say, “Dante, leave me the fuck alone, I’m grown, don’t ask me that anymore.” He just didn’t want to be reminded of being positive. I understand that now.
So after that, I would get tested once a year, if not every six months. In 2013, something told me something wasn’t right about the guy I was dating. He was very cold and angry when talking about people he’d dated in the past. We’d had sex without a condom at some point. One day I texted him, “When was the last time you got HIV-tested, and do you have any STIs I should know about?” He texted back: “We gotta talk.” But he wouldn’t give me a straight answer. So after we broke up, I got tested a month later. It was negative. But I knew there was an incubation period, and the next time, I tested positive. I thought, “I should’ve used a condom.”
Tim Murphy: Why do you think you didn’t?
Dante: Honestly, it wasn’t that I wanted HIV, but I had lost my best friend to AIDS, and I felt like it was inevitable that I was going to get it, so I just wanted to get it over with.
TM: What was your reaction to the news?
Dante: I had none. I didn’t cry. No words. I just sat there. My ex-boyfriend was waiting for me in another room. He asked, “Is everything OK?” I shook my head and said, “I wanna go—let’s get out of here.” I went home and went into a depression. I didn’t tell anyone in my family. I went on FMLA [Family Medical Leave Act] from work and was gone for over a year. I went to a therapist and talked about living with HIV. I told certain longtime friends who I thought would always be there, but I stopped hearing from them. I told my sister, who cried on my shoulder. I told my mom and was surprised when she didn’t cry.
I was depressed and didn’t want to live. I tried suicide a couple of times. I didn’t want to be another gay Black man with AIDS, then die. I thought I’d rather die on my own terms. But I still sought care at AIDS Healthcare Foundation, because I knew that was important. The doctor there told me my body was keeping my HIV viral load low, so I didn’t need to start treatment right away. I didn’t start until a year after diagnosis.
TM: Did the doctor tell you that starting meds could keep your virus undetectable and hence you couldn’t transmit it to anyone sexually?
Dante: No. But once I started Atripla [which is no longer recommended, because of side effects], I was nauseous, dizzy, very bad night sweats. So I switched meds. But I was also trying to come to terms with the guy who infected me. I believe he knew he was HIV positive when we had unprotected sex, but he didn’t tell me, so I took him to court. [Ed.: It is still a crime in Florida to have sex with someone without telling them you are HIV positive if you know you are.] He actually ended up confessing to the detective, who recorded him in a conversation with me inside the police station. He ended up serving close to two years in prison. He’s out now. I’ve seen him. He also was a nurse and lost his license over this.
TM: Many activists living with HIV are working to get states to throw out or at least revise such laws. Do you feel he deserved that sentence?
Dante: I’m kind of on the fence about it. If he was doing this to other people, then yes. I’ve seen him since on the apps, and he now tells people up-front that he’s positive. Now, I don’t want anything else bad to happen to him. I just want him to be honest about his status going forward. When the detective talked to him, he said he’d found out he was positive recently as well and thought it was from me.
TM: So what happened next? Did you go back to work?
Dante: For a short time, but I couldn’t handle the pressure, so I went back on leave and then they hired someone else in my position. I was out of work for a year, applying everywhere. A case manager at AHF had referred me to NFAN because I’d said that I had no income, and they said that NFAN could help me with my mortgage. I developed a very good rapport with Beth Parker at NFAN, who’s under Donna. I told her that I couldn’t get a job anywhere, even Amazon, and she brought in Donna, who asked me what skills I had, and I told her. She asked me if I could start on Monday, a temporary job in different departments. But I eventually became the full-time HOPWA case manager.
TM: What do you do in your job on a daily basis?
Dante: I meet with clients who are living with HIV and/or AIDS and assist them in our permanent housing program. I can assist them getting a move-in deposit or getting their lights turned on. I also do temporary short-term rental, mortgage, and utility assistance, which is similar to my background in mortgage underwriting. I love dealing with people who really need the help, in a dire situation or on the streets. I love the gratitude they have. I say, “Hey, this is just my job.”
TM: So what about your own mental health—how are you doing now?
Dante: I was depressed for three years, but I’m doing much better. I’m still in counseling. I think everyone needs it now and then.
TM: Have you told most of the people close to you about your diagnosis?
Dante: My mom and two of my sisters. Not my dad or anyone on his side.
TM: Have you been dating?
Dante: I was in a relationship that ended last summer. It’s been devastating to me. We were together almost a year, but I really thought we were going to be together forever. We talked about marriage. Then I found out he was entertaining other people on the apps, so I went back to therapy over it.
TM: It sounds like therapy has been a lifesaver for you. What do you think is the benefit of therapy?
Dante: You never know if your friends and family are going to be biased when you talk to them about stuff, because they’re close to you. Are they just telling you what you want to hear? So I like talking to someone who is unbiased.
TM: You said something earlier about not wanting to be another gay Black male statistic when it comes to HIV. What do you think it will take to end the epidemic in young men who have sex with men of color?
Dante: I honestly don’t know the answer. I think stigma in the Black community—we don’t talk about this. It’s partly why I wanted to do this interview. It’s a risk disclosing, but to me the greater risk is not talking about it. We need to talk about this more freely, without feeling ashamed.
TM: It sounds like you’ve become more and more open about your status. What has that been like?
Dante: A blessing. I thought, “Oh no, people are going to find out, and they may talk bad about me.” But I don’t care, because I’m a person living with HIV. That’s the truth. I can’t get mad at the truth. I’d rather be out there talking about it and trying to explain it. I didn’t even know there was PrEP back in 2014 when I was diagnosed. I wish I’d known. Us not talking about HIV is why we don’t know about how to prevent and treat it.
TM: What are your goals in the years ahead?
Dante: I’d like to work my way up in HIV services, go to different meetings and become one of the heads of NFAN.
TM: Have you thought about going back to school?
Dante: I have. I feel like I’ve been out too long and it’d be extra hard for me, having to go back and be in remedial classes.
TM: What do you do for self-care and joy?
Dante: My animals. I have a Bambino, a hairless cat with dwarfism, named Alex, and a chihuahua-terrier mix named Pedro. They get along great. When I put one on punishment, the other is crying to get him back. And I have my family, even though that can be stressful. My sister’s firstborn, my nephew, has lived with me since he was 8. I’m also a TV buff. My favorite shows are Watchmen and How to Get Away With Murder.
TM: What do you make of your life’s journey so far?
Dante: I’m resilient. No matter how hard the struggle may look, even if you may not see a very good outcome from where you are, you can overcome it. I feel like a phoenix. I was at my lowest point. I tried to commit suicide. One day I was lying on my bathroom floor after taking pills and I thought, “If I wake up, I need to just survive each day at a time. And eventually I won’t feel like this as much.”
TM: And how do you feel about your life today?
Dante: I’m not going to say I’m happy. But I’m happy with what I do, and I love my life. I’m in a completely different place than I was two or three years ago. I didn’t see the light at the end of the tunnel then—and now I feel like I’m in the light.