Successes and Challenges Facing HIV Service Providers in Tampa Bay
We spoke to Rebecca Nessen, M.P.H., vice president of strategic initiatives at Metro Inclusive Health.
Rebecca Nessen: I’ve been in this role for a little more than a year and with Metro for more than six years. Before that, I worked in Atlanta at a free clinic for homeless women and children. I was there for four years while getting my graduate degree at Emory Rollins School of Public Health. My interest and focus has always been on serving people from underserved communities.
Metro was incorporated as a nonprofit in 1992 as an HIV/AIDS agency, so we’ve been around for a long time doing services for people living with HIV, as well as for the broader LGBTQ community, including medical case management, prevention and outreach, health education, and HIV and STI testing. Then in 2013, we partnered with CAN Community Health to do HIV medical care services, and in 2015, we opened our own primary medical care services for the broader LGBTQ community, although all are welcome. We also do PrEP and hormone therapy for the transgender community.
Our annual budget is $25 million. We’re headquartered in St. Petersburg and also have sites in Tampa, Clearwater, and New Port Richey. We have almost 200 people on staff. The staff is 57% LGBTQ, 41% white, 35% Black, and 26% Hispanic. Our senior executive management team is 44% white, 28% Black, 23% Hispanic, and 5% Asian, with 49% identifying as LGBTQ.
As for clients, we have about 10,000 people annually that we touch with not just case management but outreach and primary care and testing services. The clients are 65% low-income, 35% minority, 70% LGBTQ, and 25% living with HIV. The demographics vary by area. St. Petersburg is a lot older and white, while Hillsborough County is younger and more racially, ethnically, and socioeconomically diverse.
Tim Murphy: Can you say more about your gamut of services?
RN: We do primary care, STI testing and treatment, hormone therapy and transgender care, and extensive PrEP and nPEP [non-medical post-exposure prophylaxis, which is when someone possibly exposed to HIV sexually immediately takes HIV meds for 28 days to prevent infection]. Last time I checked, we were the largest PrEP provider in Florida; we have around 900 patients currently on it. We do PrEP same-day start. We do medical case management, behavioral health counseling, substance use treatment services, psychiatric medical management. We will help people who are diagnosed HIV positive get on meds within three to five business days.
Our prevention and sexual health department includes all our evidence-based intervention classes and groups. We also do extensive outreach, seeking people in high-risk target populations.
TM: What is the HIV picture in both counties?
RN: Certainly within both counties, rates of new HIV diagnoses are increasing, which is disturbing, with higher rates of infections in young men who have sex with men (MSM) of color, particularly in south St. Petersburg.
TM: How are efforts going to get and keep more MSM of color on PrEP?
RN: It’s a challenge. We have many patients on PrEP, but the majority are insured white men. We’ve heard a lot about the stigma associated with PrEP, or people concerned that they may not be able to cover the cost. We hear people being highly concerned about kidney function. Also we have people who’ve decided that one pill daily is just not for them, or who have trouble keeping up with the appointments every three months. We’ve redesigned our PrEP navigation in order to make it as easy as possible on the patient. Our navigators are all PrEP peers who can build a strong rapport. That has increased our retention. We have marketing campaigns promoting PrEP, a lot of info blasts and promotion of different events. And all of our HIV testers out in the field are educating and engaging people about PrEP.
TM: Do you do housing?
RN: Currently, not at all. We don’t get HOPWA funds. There are a couple of resources out there, but I don’t know who gets the HOPWA funding in the area.
TM: Where have you had successes?
RN: We’ve had tremendous success with our medical centers, strengthening our navigation and linkage-to-care. We recently applied with [federal agency] HRSA to be a federally qualified health center (FQHC) “look-alike,” which is a step toward becoming an FQHC. We also recently became accredited by the Council on Accreditation, which evaluates the quality of social and medical services being provided.
TM: Where do you feel challenged and frustrated?
RN: Certainly there are challenges with engagement with certain target populations. We would really like to see our PrEP patients become reflective of the actual disease burden of HIV [young MSM of color].
TM: Do you have MSM of color on your PrEP staff?
RN: Absolutely. And we have similar peers within all aspects of the agency who are full-time staffers and are not just stipended or tied to a particular grant.
TM: What would you do with unrestricted new money?
RN: We certainly would continue to expand our reach within the community for medical and behavioral health services. We’d also expand our mobile health clinics to take services directly into communities and partner with agencies. Also maybe to provide housing services.
TM: Any stories you can tell us?
RN: Every story that comes to mind is about individuals whom we diagnose with HIV and get connected immediately to services and care, perhaps PrEP for the partners. We have interdisciplinary team meetings. Just last month, I was in a room with our chief operation officer, our trans care navigation medical director, our linkage navigator, all talking about one person whom we had diagnosed with HIV and engaged into both HIV and hormone care. The person missed two appointments and then showed up having decided that HIV medication was not for them. Ten of us ended up talking about this one patient for a solid 45 minutes, asking, “How can we make sure this woman does not fall out of care?” So we asked one of our trans care navigators, a Black transgender woman, to reach out to this patient and talk to her one-on-one about her fears and concerns. We ended up coupling her hormone appointment with her HIV appointment, got her transportation to her appointments, and were able to get her back into care with the trans care navigator as her peer and support system. That story makes me feel like we’re doing everything right.
TM: What do you do for self-care and joy?
RN: I love to experiment with new cuisines and cook for my family and my wonderful partner. I have two young daughters, and that’s certainly an area of joy that fills me up and keeps me going. I want to be able to say to them someday, “Did you know Mommy used to work at a place that was just for people with HIV and LGBTQ people, and isn’t it crazy we used to have services tailored to that community?” I hope they grow up in a world where the need for that doesn’t exist anymore.
Positive POV: Precshard Williams
We spoke with Precshard Williams, 36, of St. Petersburg, Florida, who is lead prevention and sexual health specialist at Metro Inclusive Health. He was diagnosed with HIV in 2005.
Precshard Williams: I grew up in Daytona Beach, Florida. I was very outgoing. I liked to dance and sing in the choir with my two sisters. I lost my dad at 9, so I became a momma’s boy. I did well in school. I came out as gay in 11th grade. It was challenging, because resources in Daytona were, and still are, lacking in terms of how to handle a child of the “alternative lifestyle,” as they called it at the time. My last year of high school was rough, and I fell behind in my grades.
Tim Murphy: Did you get support from anyone around you regarding your sexuality?
PW: I definitely had support from my siblings, uncles, and aunts. But my mother had to come to grips with it. She blamed herself. In the Black culture, they thought it had to do with how a child was raised, something he was exposed to.
TM: So what did you do after high school?
PW: I migrated to Orlando. I needed answers about who I was as a Black gay man. I initially identified as bisexual and had a girlfriend. I didn’t realize that I had internalized homophobia. I wasn’t comfortable with who I was. I didn’t want to be effeminate, a drag queen. So in Orlando I met Angus Bradshaw at the organization Miracle of Love (MOL), who helped me.
TM: What compelled you to get tested for HIV?
PW: At MOL, I was educated on HIV and how to protect myself. And I got an STI from someone I was dating, and he wanted me to test for HIV as well. In the back of my mind, I thought he was cheating on me. I didn’t realize I had low self-esteem at the time. This guy was very popular. I was in love with him and placed myself in situations I should not have.
TM: What was your reaction to your HIV diagnosis?
PW: I passed out. And when I came to, my doctor was asking who my partner was and saying that I needed to call the department of health (DOH) for further testing. Of course I didn’t find the courage to do that for four or five months, even though I was getting calls and drop-by visits from the DOH, leaving notes in my door, “Someone in your home tested positive for an STI ...” I was living with my best friend, my support, whom I immediately told.
So finally I go back to the DOH, and the staff connected me to the Hug Me Clinic. I was afraid of being seen by someone. I was embarrassed. So I started treatment a month later with Orlando Immunology, which was doing a treatment study for people with HIV. But I had side effects, because I was accidentally taking three times the dose. I got sicker and sicker each day. I brought my pills to the clinic and freaked out the whole office! And then I started taking the right dose and I was fine.
By that time, I had told my family. My mom and I had a better relationship by then. Disclosing my HIV status to her broke the ice on the gay thing, because my risk of getting HIV as a gay man had been one of her main concerns. I also felt like it had been inevitable as a gay Black man because it’s so prevalent in our community.
So during the time I was in the study I learned so much about living with HIV, and my family and friends did too, which made me feel better about the situation and who I was. So I started to go back out there and date again. Not all those dates led to me being in a relationship, but some lead to great friendships with people who respected me as someone who could be honest about their situation. Even if they were afraid of being in a relationship with me, they wanted to learn more about me.
One day Angus told me that a position had come up at Miracle of Love. I applied and didn’t get it. I didn’t have a college degree. I didn’t share my HIV status when I applied. I wasn’t comfortable putting it out there yet, and I didn’t want to disappoint Angus. So MOL wanted me to attend an HIV prevention intervention called “D-up!” standing for “Defend yourself!” so I would see what I was applying for in the future. But right after, the person who got the job instead of me was let go, and Angus said, “We want to give it to you.”
I was with MOL for almost nine years, slowly navigating to a peer advocate position. When that position opened up, my boss said, “I don’t have a staff member who identifies as HIV positive,” so I went home to my partner and my mom. My partner said, “Go for it.” My mom said, “God allows these things to happen, because you’re meant to help people.” And so I finally told Angus I was living with HIV, and I got the job.
I was a peer advocate from 2013 to 2018. My role was to help facilitate newly diagnosed individuals or bring people back into care. I facilitated a group that focused on the stress of being newly diagnosed, disclosing our status, money issues, criminalization laws. [Ed.: Florida has not updated its HIV criminalization laws to reflect the fact that those on HIV meds and undetectable are incapable of transmitting the virus, a fact known as undetectable equals untransmittable (U=U).]
But I knew I had to grow professionally to help people on a larger scale, so I came to Metro in fall 2018 in the role of prevention specialist for the Zero Pinellas initiative to end the epidemic here. My job was to identify areas of high HIV prevalence, so we’d scout communities of color that Metro or other agencies had not yet gotten into.
Then I was put into the position I’m in now, where I oversee a team of individuals and of our CDC [federal Centers for Disease Control] and DOH grants focusing on the MSM population of color, making connections with community partners and scouting locations for my staff to bring trainings and presentations to.
TM: How is it going, connecting young MSM of color to PrEP?
PW: PrEP is our number-one priority, but it’s not easy. There’s a lot of misconceptions and misinformation out there. I hear things like, “PrEP puts you at a higher risk for HIV,” “It puts HIV inside you,” or, “It’s super-expensive,” because they don’t know there are programs that offer it for free. Or I hear, “That’s not for me—I don’t do those things.” In the African-American community, the stigma around both being gay and around HIV are huge barriers.
TM: So what do you do or say to counter these misconceptions?
PW: I use my own HIV status and my experience of being on Truvada for more than 10 years. I say that there is a side effect to every medication, including Tylenol. And I tell people that it’s easier to stay HIV negative, because then you won’t have to disclose your HIV status, which if you don’t do in Florida during a sexual encounter, you can go to jail—and you’ll be plastered all over the news—even if you don’t transmit HIV.
TM: What do you tell people about their fears of PrEP side effects?
PW: I tell them that if they’re on PrEP, they’ll see a doctor every three months who will do lab work to monitor their kidneys, liver, etc., for side effects.
TM: How do you try to explain to people the importance of not just starting but sticking with PrEP, because many people start and then drop it for various reasons?
PW: I frame it around my own experience of being virally suppressed, explaining that you need to keep a certain amount of meds in your blood to stay protected.
TM: What are your personal goals going forward?
PW: To continue to make connections with people of color to create avenues for them to be engaged into, and stay in, some type of health care. I tell them that even if they’re HIV negative, they’ll have better health outcomes if they stay in care.
TM: When it comes to ending the epidemic in your area, how do you crack that final nut of bringing down HIV rates among young MSM of color?
PW: There are two barriers: stigma and homelessness. Pinellas has no housing programs at all. We have homelessness everywhere, and if people have nowhere to live, they’re not going to worry about putting on a condom or taking a pill. I had to purchase a home just to have a place to stay, because rent was so expensive, and I spent $150,000 for a home built in 1958. We have to bring to the table the decision-makers around this issue—the mayors and city officials.
TM: And what about stigma?
PW: This is where the conversations come in. As a person living with HIV, I feel like it’s a huge disservice to my community to not share my status and experience. Silence kills people. I have friends who’ve been diagnosed with HIV who didn’t even want to share that with me because they were so embarrassed. I have friends who’ve died from not staying in care because of things like homelessness. We need more celebrities to talk about this.
TM: We need to put more pressure on celebrities to talk about HIV?
PW: Yes. And not just celebs, but politicians. Everyone who is able to sway decision-making. For example, I’m a huge Cardi B fan. She’s not Black, but she’s a person of color. I’ve seen her recently speaking up about presidential candidates [Ed.: Cardi B is a prominent Bernie Sanders supporter] and getting people out to vote, but I think she won’t talk about HIV because she thinks people would say she’s HIV positive. We haven’t had anyone since Magic Johnson really step up to the plate and say, “I’m going to own this.”
TM: Precshard, what do you do for self-care and joy?
PW: I am a huge family person. Even my friends have become part of my chosen family. So I spend as much time with them as possible. I love my dogs, and I love bike-riding. And my partner, soon to be my husband, was my best friend first for a very long time and gave me quite a lot of support. He relocated here with me, and he’s my hero. We have crazy little dance contests and we work out together at the gym, but we’re lazy and we put more emphasis on what we’re going to wear to the gym than the workout. We’re trying to show more of our relationship on social media so people can feel more courageous about coming out about the love they have for someone. Our favorite TV show is now Charmed, the reboot. My partner’s name is Princeton, so he’s Prince Charming—he’s the charmed one. He’s an anime fan and I’m a Batman fan, so he has his own anime room and I have my own Batcave.