Successes and Challenges Facing HIV Service Providers in Palm Beach County, Florida
We talked with staffers at FoundCare, Inc.: CEO Yolette Bonnet, M.B.A., chief operating officer Rik Pavlescak, Ph.D., peer navigator Gilberto Velez, and chief strategy officer Christopher Irizarry, M.P.A.
Yolette Bonnet: I’ve been in this role 18 years, going on 19. Prior to that I was in New York City, working for the health department and the public hospitals system. I wanted a quieter life, so I moved here—and realized that people here [in Florida] were missing many of the services we had in NYC. The main source of anything HIV-related in this county was the health department. So we took the challenge of transitioning this organization into primary care for the HIV folks we were serving.
This organization was founded as the Comprehensive AIDS Program of Palm Beach County [PBC] in 1985. The following year, it got a grant from the Robert Wood Johnson Foundation to help people die with dignity. We could hire case managers. Then came the Ryan White money, which allowed us to expand services. Then in 2002, we created FoundCare—at first, just to do HIV care. But then a study showed that 250,000 people in the county were lacking access to health care, regardless of disease. So a funder said they would fund us if we kept our target [HIV] population but expand into larger primary care. So we consulted with other HIV agencies, like Desert AIDS Project in Palm Springs, California, about how to do it. A lot of HIV agencies that did not get on the federally qualified health center [FQHC] train did not get funded.
So we’ve experienced tremendous growth, because we serve people with compassion and they want to come back. We opened the health center with 2,300 patients, and we’ve served nearly 17,000 in 2019.
We have an annual budget close to $30 million. About 25% is from government grants, but most of our funding is from generating [insurance billing] revenues and from our 340B pharmacy. We also get some money from local foundations and individuals that are passionate about HIV or about primary care.
We have a staff of about 173. We have seven sites throughout the county, in zip codes with both the highest rates of HIV and of underserved people. We have a large minority staff, as well as being at least 20% LGBTQ. I would say we’re 75% female and 25% male. I know of one openly transgender staffer.
Rik Pavlescak: A majority of our staff speak Spanish or Creole in addition to English. We also hire peer advocates. At one point in 2018, we had as many as 18 staffers living with HIV, but we lost that grant, so some have left. I think we have about seven now. As for six senior managers, three are men and five are racial or ethnic minorities. And the majority of our board members are of color.
Tim Murphy: Cool, what about clients?
RP: In 2018, we had about 2,116 HIV-positive clients out of about 15,000 clients. With outreach activities like distributing safer-sex kits, we probably reach about 25,000 people annually. As for client demographics, in 2019, they were 2.2% Asian/Pacific Islander, 39.7% Black, 16% Native American, 38.4% white, 44% Hispanic, and 19.4% unreported or unknown. Our Ryan White clinic patient population is 21% men who have sex with men.
TM: Cool, what is your gamut of services?
RP: We have primary care, which includes pediatric and adult; mental health, including therapy and psychiatry; basic dental; infectious disease; pharmacy; prevention counseling; and testing. We have 90 community mom-n-pop partner shops that do rapid HIV testing. We’re carving out a space to start doing women’s health, OB-GYN, one day a week.
We also do medical case management, peer advocacy, emergency financial assistance, a food bank, emergency transitional housing, and transportation. And anytime someone tests positive for HIV, we can start them on treatment the same day.
TM: Do you get funding from HOPWA [Housing Opportunities for Persons Living With AIDS]?
YB: We don’t anymore. It became a hardship. We were always waiting for them to reimburse us, but there was a huge lag. The housing we do is through Ryan White—short-term, transitional housing for people coming out of prison or substance treatment, limited to six months but usually 90 days. It’s often hotels, and we pay the bill.
TM: How much of an issue in PBC is housing?
YB: There’s not enough housing stock. We even have workforce housing challenges, because most of the folks coming from up North can buy homes down here in cash, which decreases the low-income housing stock. There’s also a lack of public transportation. We’re a big county. But we’ve learned to stick to what we do best, which is primary care. So we work with other partners in the community to advocate for housing for our patients, but we don’t compete for that funding.
TM: How are you doing on viral suppression?
YB: Usually we get 97% of our clients linked to care and 90% virally suppressed [on HIV meds and undetectable]. Our rates are better than the county overall.
TM: What do you do on the prevention side of HIV?
YB: We were the first agency in the county to offer PrEP [pre-exposure prophylaxis], in 2015, and in 2018, we had 250 people on PrEP, but next year we’ll have funding to do more and also to follow up on people who start PrEP with us.
Gilberto Velez: A lot of people are afraid of PrEP because they’ve heard of the lawsuits [claiming that PrEP has harmful side effects], but now there’s Descovy [which supposedly is linked to fewer side effects than its predecessor, Truvada], and soon there’ll be injectable PrEP, so we don’t see people getting scared as much as they used to. We explain to people that every medication has side effects, but that Descovy has way less risk factors than Truvada.
TM: How would you describe the current HIV picture in PBC?
RP: Our HIV numbers are a bit different than many other places. We’re known for having more heterosexual women with HIV than across the country. Of all HIV cases in 2017, 43% were in Black heterosexuals, 17.7% in white men who have sex with men (MSM), 12.1% were in Black MSM, 8% in Hispanic MSM, 6% Hispanic heterosexuals, 4.5% white heterosexuals, 4% Black injection drug users (IDUs), 3.3% white IDUs, 1.4% Hispanic IDUs.
TM: What do you think explains a higher-than-usual rate of heterosexual HIV cases?
YB: There’s a high percentage of minorities in the county.
Christopher Irizarry: And 25% of people in the county are foreign-born, so maybe they don’t know as much [about preventing HIV].
TM: How much is the county participating in end-the-epidemic efforts?
RP: They’ve applied for funding under the Trump administration’s Ending the Epidemic initiative. In the meantime, they’ve talked about convening the community to create a more formal plan, more targeted outreach for hotspots as they sprout up.
TM: Also, there is a wealth disparity between Palm Beach proper, which is its own island, and the rest of mainland Palm Beach County, yes?
RP: Yes, the island is quite rich, as are Boca Raton and Jupiter, but the rest of the county—which traditionally was the service quarters for the island—has about 24% of the population living at or below the poverty level, with many foreign-born.
TM: What successes have you achieved in recent years?
YB: We went from being an AIDS services organization of about 40 employees that would very possibly not have stayed relevant—because we only referred people to services elsewhere, while holding their hands—to being a self-sufficient agency that actually generates revenues. And now that we’ve changed the name to take “AIDS” out, our patients thank us every day for not having to carry that stigma when they walk in the door. We’re serving the larger community. We’re the little engine that could—and did!
RP: We were at the forefront of pushing HIV rapid testing when it came out. We had to fight the state health department to let us offer that at 90 sites, including barbershops. We were the first ones to do PrEP in the county, and our PrEP doctor has trained other organizations. And we’re working hard to get to the root causes of our patient population that is not virally suppressed.
GV: I’ve been here a couple of months. The whole staff is very open. They don’t look at you as if you are less just because of your HIV status.
TM: Where do you feel frustrated or stuck?
YB: I’d like to have more providers in the community. We have an aging population of physicians, so who’s going to carry on the mantle? Recruiting quality, compassionate physicians is very competitive. And of course, Ryan White is constantly refocusing where they put their dollars, so you develop a program and suddenly the leadership in Washington changes. So that’s a challenge.
RP: Also, Medicaid did not expand in Florida.
YB: About 38% of our total county population is uninsured. Our mission is to serve anyone regardless of ability to pay, and we have a sliding-scale fee, but we’re lucky if some patients can give us the $25 for the visit.
CI: While agencies in other states are growing, we have to be careful, because the coverage is just not there for the uninsured in Florida.
TM: Do you offer any LGBTQ- or MSM-specific programming?
YB: No, but our sister agency, COMPASS, the LGBT community center, does. A lot of their clients come here for their primary care.
TM: What would you do with new, unrestricted funding?
YB: We’d have a site in every community in the county—about 10 more sites. And I think we’d do more health education in the community in terms of the services we provide. Most of our patients are aging and also dealing with things like diabetes and high blood pressure.
TM: What do you think it will take to end the epidemic in PBC?
YB: I think the missing pieces are bigger than what can be found in just the county. We’re working on promoting U=U [the public health message that being undetectable equals being untransmittable, unable to transmit HIV sexually to another person], but I would love to see an HIV cure happen. We want to get out of the HIV business.
RP: The cure would be great, but we have to keep doing what we’re doing—getting everyone tested, then linked to either HIV treatment or PrEP.
TM: Can you share any stories that illustrate the work you do?
RP: I’m thinking of a client who came to us living in his car, HIV positive, not on meds, and substance-abusing ... and through case management was able to get onto treatment, into stable housing, and virally suppressed over a period of time.
Another one of my favorite stories that touched my heart was when we had a housing program, and our housing director wanted to discharge a woman because she was noncompliant with her lease, a variety of infractions. I said, no, we need to meet her first. When I saw her, my heart broke. She weighed all of 80 pounds, very frail, substance-abusing, clearly not well. I said to my directors, “No, this is the type of person we’re here to serve—we’re not throwing her out on the street.” That was probably 12 to 13 years ago. Recently, I saw her and she gave me a big hug. She’s in recovery, stably housed, virally suppressed, and one of the biggest advocates for the services we provide.
TM: What do you all do for self-care and joy amid your daily duties?
YB: I wake up at 4 a.m. and meditate before I pick up my phone. I also have four children and three grandchildren who bring me lots of joy and keep me grounded.
CI: I do the $5 Tuesday night at the movies with my wife.
RP: I scuba-dive, mountain-bike, and travel with [my] husband. We go somewhere almost every other weekend.
GV: I go to the beach and watch cartoons.
Positive POV: Gilberto Velez
We had a stand-alone conversation with Velez, 36, a peer navigator at FoundCare, who was diagnosed with HIV in 2012.
Gilberto Velez: I grew up between Puerto Rico and New Jersey and moved to PBC in 2015. I was diagnosed with HIV in Elizabeth, New Jersey, when I was working as an office administrator in health care. As a gay male, I would get tested for HIV every three months. At first, it looked like a false positive. They had to send my bloodwork to several labs. I was surprised. I think it happened from the one person I slept with, once, without protection. That’s all it took.
Tim Murphy: What was your reaction?
GV: I had none. I knew it wasn’t a death sentence. I was disappointed, but not worried. But I’m bipolar, and I also had recently come out of a relationship, so my depression kicked in. It took me a couple of days to tell my sister, who was in denial. She couldn’t believe it. Once I got the final [positive] results, she broke down completely.
At the same time, I walked off my job, totaled my car, left my apartment, and ended up homeless because I didn’t feel comfortable living with a family member. I also told my godfather, who is gay. He was accepting and gave me advice every day.
So I saw a doctor, case manager, therapist, everyone. I started treatment. I was living in the parks for a month and a half, then a friend put me up in a hotel, then helped me get a studio through the welfare office.
After all this happened, I ended up at one point in a mental hospital for about four days. Then I met my now-ex-husband, and we decided to move to a quieter place, because in Elizabeth, a friend found out I had HIV and told everyone. So we moved to Allentown, Pennsylvania, but when we split up, he stayed there and I moved to Florida to be closer to my godfather.
So now I’m on disability and work at FoundCare part-time. I was going to COMPASS, the LGBT center here, where my case manager told me about the position here at FoundCare, so I applied.
In this job, I mainly educate people and try to prevent them from getting infected. We go out into the community and do workshops. Sometimes we walk around, sometimes we set up a table and talk to anyone who will listen, offer them condoms, female condoms, and education about things like PrEP, give them pamphlets.
TM: What kind of responses do you get from people?
GV: The vast majority are grateful, because we’re preventing them from getting infected. I share my status with some of them if I feel it’s needed. Providers in the community definitely need more education about PrEP.
TM: What are your goals going forward?
GV: To make sure that people can hear who I am and what happened to me, and know that if I can overcome it, they can too. I’d like to have a child. I’m not in a relationship, currently. I don’t think I have to be to have a child, but it would be ideal.
TM: Gilberto, what do you think is the missing piece to end the epidemic in MSM of color?
GV: One factor is that many don’t make enough money and can’t support themselves and pay rent. And so you’ll end up doing things you normally wouldn’t do. One of my addictions whenever I got depressed was sex.
But I also think it’s important to bring down the laws [that criminalize people with HIV for having sex without disclosing their HIV status, even if they are undetectable and unable to transmit HIV]. In Florida, this is a felony. That needs to be overturned.
TM: What would you say to someone who’s newly diagnosed with HIV and freaking out?
GV: “Let’s talk about it. You’re not alone. I’m here. It’s not a death sentence.”
TM: What do you make of the journey you have been on?
GV: I have come across people who have gone through things, as I have, and I’ve been able to guide them and counsel them, explain what is good to do. Just talking helps a lot of people. You need to go through challenges in life in order to achieve anything you want.