Successes and Challenges Facing HIV Service Providers in South Florida
We talked with Stephen Fallon, Ph.D., executive director of Latinos Salud, an agency serving gay and bisexual Latino men.
Stephen Fallon: Latinos Salud has been serving South Florida for over a decade, as the only gay Latino HIV agency in the state with free, walk-in services. Our mission is focused specifically on HIV and STDs. We exist to provide client-centered, culturally competent health education and integrated preventive, screening, and linkage services throughout South Florida in order to reduce the burden of communicable diseases and improve health outcomes. To achieve this mission in a diverse community, Latinos Salud serves all Latino gay, bisexual, or otherwise identified men who have sex with men (MSM), all persons living with HIV, and all persons who identify as transgender.
Our inaugural program 11 years ago targeted prevention services solely to young, Latino gay and bisexual guys. There'd been a 185% increase in new HIV cases in young Latino men. I cofounded the agency with Rafaelé Narváez, our director of health programs. Prior to this, I had a consultancy to help set up nonprofits. We started this agency the very moment we found out that another agency was dropping their HIV services. I thought I'd be a drive-by executive director, but the needs were so deep that we kept adding programs. And now I have no consultancy anymore. This is a 70-hour-a-week job for me.
Today we continue to serve young Latinos, as well as the rest of the MSM and transgender community throughout Miami-Dade and Broward counties, with free walk-in HIV testing, appointment-based STD screening, linkage to care, risk-reduction counseling, peer leadership development, research studies, support groups, condom distribution, outreach online and at late-night venues, and Ryan White case management [in Broward].
Tim Murphy: What is your staff like?
SF: I'm HIV-negative and one of three white people out of 26 full-time staff who offer services 50 hours each week until 9:00 p.m. from one Broward and two Miami locations, as well as late-night outreach from mobile HIV testing vans. All of our staff are bilingual. Over half are themselves immigrants; nearly half are living with HIV; all are LGBTQ. We try to hire from the community we serve. No staff are trans at the moment -- we had some in the past, but one went to grad school and one went to work at the health department. Our entire board is Latinx.
Each location's non-clinical feel and supportive programs build trust and rapport with community members who would not otherwise feel secure seeking services elsewhere. We consistently rank in the top tier of CDC-funded agencies for success in finding persons who had not known their HIV status and bringing them into care.
By the end of this summer, we'd provided 2,200 HIV tests, and we'll probably hit 5,000 for the year, with another 3,500 STD tests. We do one-on-one prevention counseling sessions, plus empowerment support groups. Overall, if you count momentary contacts from things like the Pride festival and health fairs, we touch about 25,000 to 30,000 people a year.
Our annual budget is $2.2 million, almost all from state and federal grants. But grants are not enough -- and we haven't seen the community step up [with private money] to support those last few pennies on every dollar that we need to ensure program continuation. We hope that will change! With the Florida AIDS Walk, we raised $174,000 this year, then AIDS Healthcare Foundation matched it.
TM: What story do the HIV stats in the area tell?
SF: We serve Miami-Dade and Broward (greater Fort Lauderdale) counties, which rank number one and two, respectively, in new HIV infections in the United States, and number three in new AIDS cases. The CDC reported last year that new HIV cases are declining in all behavioral and demographic groups nationwide except for two: gay Latinos and gay youth [including younger gay Latinos]. We have observed this same trend in South Florida, where gay Latinos represent a disproportionate share of a growing epidemic.
Over the last 10 years, the portion of new HIV cases has risen most rapidly among Latinos, from 50% to 68% of Miami-Dade's cases and from 18% to 31% of Broward's cases. Males comprise 82% of Miami-Dade's HIV and AIDS cases and 78% of all Broward cases. MSM cases represent 85% of Miami-Dade's new male infections and 74% of Broward's.
The portion of new HIV cases amongst males attributable to MSM exposure is far greater for Latinos than for African Americans or Caucasians. Hispanic MSM are the number-one priority population for the Miami-Dade Prevention Planning Partnership for both primary prevention [those at risk of HIV], and secondary prevention ["prevention with positives"] at risk of transmitting HIV. For Broward, Hispanic MSM are the number-three priority population in both categories.
TM: What's driving those high numbers among Latino MSM?
SF: Language barriers, lower health literacy, and closeted sexual orientation all play a role. Also, stigma prevents many from confirming a feared diagnosis, or from being seen in clinics that serve people living with HIV. Such stigma exists even in MSM communities, as a defense mechanism to push off fear. Stigma closes off disclosure, or even discussions about testing together.
Modern HAART therapy offers the potential of a long life to southerners living with HIV, yet Latino men in Miami-Dade live on average only two-thirds as long after an AIDS diagnosis as do their non-minority peers. (And half of Miami-Dade's Latinos are diagnosed "late," receiving an AIDS diagnosis within 12 months of their initial HIV diagnosis).
TM: What are some of the barriers that come up after diagnosis?
SF: HIV stigma, though prevalent in all communities within the Deep South, is especially pronounced in Latino communities. For 22 years, the U.S. banned immigrants who were living with HIV. Though the ban was lifted in late 2009, not all Latinos know of this change, or believe they can trust that the change won't be reversed. Many local immigrants come from countries with lower health literacy, especially about HIV prevention and care. Nearly 17% of Miami-Dade residents are uninsured, twice the state's rate. Many local Latinos express fear of deportation and homophobia as barriers to access health care. Additionally, they report a lack of specialized HIV care within their community.
TM: Does Florida itself present challenges in HIV care?
SF: Yes, and they're especially pronounced in our area, where the epidemic is most concentrated. Florida has rejected Medicaid expansion, and our recent governor, Rick Scott, prohibited the counties we serve from applying for significant funding made available by the CDC to aid health departments in working closely with agencies that serve minority populations.
Latinos Salud's methods for serving the community ensure that we reach people who would not feel comfortable presenting at a clinic, or even seeking services at another community-based organization. Over 90% of our staff members are bilingual gay/bisexual/MSM, and half are personally living with HIV. We use client-centered, non-judgmental, harm-reduction approaches. We personally accompany each client to at least their first medical appointment.
TM: With all those challenges, what accomplishments would you brag about?
SF: When new HIV prevention strategies like PrEP [pre-exposure prophylaxis] and U=U [undetectable equals untransmittable] came on the scene, many in our community had doubts, suspicions, and even fears about whether these would give false hope and actually lead people to lower their guard, resulting in more new HIV infections. We surveyed the local communities, assessed what people knew that was accurate versus what was not, and created a new approach we call "DiversiSAFE" that puts all HIV prevention into the same toolbox, whether condoms, PrEP, U=U, or what we call Test Twice, Talk, Trust. Between 2016 and 2018, we staged four fun town halls that each brought out 300 to 500 community members who wouldn't normally attend a health information session. We feel these efforts dramatically increased acceptance of diverse HIV prevention strategies in our region.
We have strong service agreements with physicians and clinics in both counties. These allow our staff to accompany a client to medical appointments, offering not just translation, but moral support, advocacy, and help debriefing the key recommendations from each appointment.
We implemented all-point STD screening a few years ago, which is in high demand with our clients, many of whom would not otherwise seek out HIV testing if it were not included in these screenings. The cost of processing STD labs has presented a major burden on the agency, far exceeding the portion allowable under our grants.
TM: What other challenges have you grappled with as an agency?
SF: Transportation remains an enormous challenge. Without subway or light rail, it often takes an hour and a half to get to an appointment by bus, and in Miami-Dade, some clients would have to travel over three hours by bus to reach the other side of the county. We don't have transportation money from HOPWA. The charity Broadway Cares/Equity Fights AIDS has been very helpful the past four or five years. With the money, we set up a corporate Uber account to have them pick up clients.
TM: Have you also dealt with people afraid of Trump administration threats that accessing services will jeopardize their immigration status?
SF: People who are the most scared wouldn't even come in. But even those who do will ask a lot of nervous questions, like, "Are you sure this is safe?" Here's a story: In Florida, partner notification services [when health officials reach out to the sex partners of those diagnosed with HIV to urge testing] can only be done by the state health department. They contact those with HIV diagnoses with good intentions, but we explain that when someone comes to our office for an HIV test and gives their address, it doesn't matter that health workers are not wearing a "DOH" sign when they show up. "Is Jésus home?" is still a threat. We had a client whom that happened to, and he was so petrified, he ran from Miami-Dade to the Palm Beach area. We tracked him down through five degrees of social media contact, found him, and told him that his information was kept internally. So now we have an arrangement with the health department where they give us 24 hours to first reach out to the client, so health workers can meet them at our agency instead of go to their homes.
TM: Do you know that you are protected legally from having to turn such information over to immigration authorities like ICE?
SF: Since we don't mark anywhere on our paperwork whether someone is undocumented, I don't think ICE would get anything out of asking us. Going back to the Obama administration, we have to verify and document whether employees are documented [as being legally in the U.S.], but not clients.
TM: How is PrEP navigation going for you?
SF: We get you to the doctor who'll give you the prescription. Florida is very much in flux; lots of new providers are coming in, and we have something like 11 places with providers on their ends that let our staff accompany our clients there so we can observe if they're culturally competent. And of course they love getting new patients in. But it's a juggling act to get someone speedy access to PrEP. We have clients who've seroconverted while waiting for a PrEP prescription. We're looking forward to integrating some of those PrEP provider services into our own portfolio to make access easier for our clients.
TM: Any special stories you want to tell?
SF: We recently collected client statements. A client named Jésus said:
"Last summer, when my friend referred me to come to Latinos Salud for my regular testing, I was also having migraines and problems remembering things. Latinos Salud's counselor really listened to my concerns, and my symptoms that day alerted him to connect me to get a CAT scan immediately."
"That night, I was astonished that this advice had literally saved my life. I was diagnosed with a brain tumor, admitted to the hospital, and started on aggressive radiation treatment. Through it all, I kept my sense of humor, and really felt the community support in getting better. I'm proud to say I'm cancer-free today, and it all started here at Latinos Salud."
A client named Mia said:
"A friend referred me to Latinos Salud as a safe organization for people like me to find assistance. I do not speak much English, and as a trans young woman, I get many resentful, hateful, and confusing looks. But at Latinos Salud, I felt welcomed and at ease without any judgment or curious eyes."
"I came in needing major help; I was homeless, unemployed, and needed help with hormones and attaining PrEP [for HIV prevention]. I was also desperate to get HIV tested. I have gone to other nonprofits and was received as if I was just another number, but at Latinos Salud I felt different. I felt loved and appreciated."
"As I disclosed my story to the counselors, I saw their sense of urgency, this really touched me deeply, not even my family has been so quick to help me. The counselors came to my rescue, connecting me with a shelter and hormones, while providing me the full screening for HIV, STDs, and hepatitis C. The counselors connected me to Latinos Salud's own PrEP navigator, and even took me to a temp agency that can help me locate employment."
"Today, my life has changed ever since walking into Latinos Salud. I have a place to live. Just this month, I have attained a worker permit and social security card, and I have landed my first legal stable job in the U.S."
Positive POV: Daniel Bravo
We talked with Daniel Bravo, 24, of Fort Lauderdale. He is a construction company administrator attaining his bachelor's degree and was diagnosed with HIV in 2016.
Daniel Bravo: I was born in Guanajuato, Mexico, and grew up there until I moved to the U.S. when I was about 20 or 21. I was diagnosed in Mexico. I'd been having unprotected sex since I was 14, saying to myself that getting HIV was never gonna happen. But when I turned 19, I got so sick. I was very skinny, trying to eat but not putting on weight -- I had AIDS. My sister is a doctor, so she was trying to help me find out what happened. As a last option, she gave me an HIV test and then said, in front of my whole family, "Oh my God, you are HIV positive."
I didn't get scared, because I knew that I could go on medication. My mom was crying, but my sister told her, "Mom, he's not gonna die, relax." So I started Atripla [medication], which was covered by Mexico, which has universal health care.
TM: So you really weren't upset?
DB: Only with the question of, "Who's gonna love me?" But after a month, I decided that if someone was going to love me, they were going to love me the way I am. I told my friends, who were very understanding and shared my food with me, and some people wanted to date me after all.
So then I came to Fort Lauderdale and turned 21, and was Googling to find out how to get medication here, and I found Latinos Salud, so I went there. I was a little afraid because I didn't know if they'd take care of me, and they said that they wanted to help me no matter who I was or where I was from, and they got me signed up for ADAP and connected me to AIDS Healthcare Foundation for my treatment and care. I didn't have a car at the time and was living with a friend, and they took me in their own car.
TM: So what is a typical day like for you now?
DB: I'm a normal person. Sometimes I don't feel that I have HIV. I don't even think about it. I just take my pills after eating, and I'm very happy I've been doing so well. I'm working, saving money. I'm reaching some of my goals. Six months ago, I traveled to 18 countries in Europe and Asia. I've had a husband for three years now. He's American and HIV negative. It's not a big deal for him. People here are a little more open and knowledgeable about HIV than they are in Mexico.
TM: What do you think are the challenges in South Florida in dealing with the HIV crisis?
DB: There's no knowledge. The Latino community doesn't know where to go, then the cultural aspect, the stigma. Many people don't want to get tested. People who aren't legal here think they don't have rights, so they don't want to go to the hospital, because they're afraid.
TM: How would you describe your life now?
DB: Very good. I'm very happy about who I am and what I'm doing. I would like to have a little more money to buy a house and start a business. I would like to have children, but not until my late 30s. I like to go to the bars and laugh and say stupid things. I also like to read history and geography books.
TM: What would you say to someone newly diagnosed with HIV?
DB: I can't say you're definitely gonna be OK, but I can say that many people, including me, are fine and in relationships. And we don't need to worry about HIV, because it's not a death sentence.