In the Bronx, Keeping Pace With New York City’s HIV Successes Amid High Poverty Rates

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 the Bronx, New York

Very high levels of poverty, homelessness, substance use, and poor mental health complicate this borough’s efforts to join New York City at large in ending its HIV epidemic—but progress is still being made.

Need-to-Know Stats About HIV in the Bronx, New York

• Bronx County, which is almost entirely populated by African Americans (44%) and Latinx people (56%), contains a quarter of all people living with HIV/AIDS in New York City.
• It is the third most densely populated county in the U.S. and contains the poorest congressional district in the U.S.
• In 2018, it was ranked the least healthy county in New York State for the ninth year in a row, driven by factors including smoking and obesity.
• Between 2014 and 2018, HIV rates in the Bronx have been higher, and have declined more slowly, than in New York City overall.
• Between 2017 and 2018, rates dropped slightly among men who have sex with men (MSM) and dramatically among heterosexuals, but rose slightly among transgender people. In 2018, people born in the Caribbean made up nearly half of new HIV cases.
• Between 2014 and 2018, timely initiation of care for those newly diagnosed rose from 75% to 86%.
• In 2018, 75% of newly diagnosed Bronx residents were virally suppressed within six months. And 79% of all Bronx residents living with HIV were virally suppressed.
• Viral suppression rates were generally similar across various categories, but were lowest (per each breakdown category) among transgender people, Black people, those ages 13 to 29, MSM, those living in the highest poverty zones, and those born in the U.S.

Successes and Challenges Facing HIV Service Providers in the Bronx

We talked to Romy Martin, M.A., vice president/health home director, and Te’Shanee Douglas, RN, clinical adherence supervisor, both at Argus Community Inc. and Boom!Health.

Romy Martin: I’ve been in this role for three years—before that, I had the same position at another agency. I’ve worked in HIV for 30 years, starting on Long Island, since people were running around with HIV not knowing they had it, not knowing why they were getting sick.

Te’Shanee Douglas: I’ve been in my role three years, and prior I did geriatric nursing and hospice care.

Tim Murphy: What’s the history of your agency?

RM: With Argus, we started in 1968 with substance-abuse services. HIV services came in with our COBRA case-management program in the early 2000s. Argus and Boom! merged last year because of financial challenges at Boom!, which of itself was a merger between Bronx AIDS Services and Citiwide Harm Reduction.

My program is called ACCESS health home coordination. It’s for people who have at least two chronic illnesses or either HIV or mental illness alone. The point is to keep people healthy and in the community and to have them avoid ER visits, inpatient hospitalizations, or other medical or psychiatric residential facilities like nursing homes. We try to keep clients engaged with their health providers, drug regimens, etc. You get a care manager who is in charge of your case. We set up a care plan with you to outline your goals, in six-month increments, which can include your medical goals but literally anything else, such as getting your GED or going to college, child care issues, unstable housing—you name it.

We have about 1,800 clients on the Argus side and about 650 on the Boom! side, 350 of whom are living with HIV.

TD: We focus not only on viral suppression but on the client as a whole, mental stability, daily living skills.

TM: Do you do anything on the HIV prevention side?

TD: Yes, we educate people on PrEP [pre-exposure prophylaxis], even though we are not doing PrEP in-house. We refer people to Montefiore or to other local clinics. We also do HIV, STI, and hep C testing. Outreach-wise, we do local events or table at events.

RM: Also, let’s say we had a client who reported to us that they were having unprotected sex with someone they knew was HIV positive. We would incorporate into their care plan a goal of receiving risk education—and that would include a referral to PrEP if they were open to that.

TM: Can you talk about your staff and clients?

RM: We have 116 staffers between Argus and Boom! We’re diverse. We have many different languages we need to accommodate. I think we have some openly LGBTQ people, but it’s not really something I discuss [with staffers]. As for clients, the majority are African American, about half heterosexual and half men who have sex with men. We have fewer than 20 transgender clients.

TM: How would you paint the current HIV picture in the Bronx?

TD: The hotspot zip code is the South Bronx. Infections among young MSM of color are still prominent, but [in my view], rates among young heterosexuals are rising—African Americans more so than Latinos.

TM: What about among injection-drug users?

TD: We’re not seeing that much. A lot of folks who are coming to the Bronx from the Dominican Republic already have an HIV diagnosis. But we also have several Latina women who found out their HIV status once they came to the States.

TM: Where have you had the most success?

TD: Viral suppression in our client population. We’ve made huge strides on that the last two years. I’m very proud of that. Rates were around 55% to 60% three years ago, but as I started doing home visits and readjusting people’s medications, that made a big difference, and now we’re at around 90%.

RM: For me, being in the field for so many years, it’s nice to now be in a time and place where people are more educated about HIV, more compliant, and really making strides being as healthy as they can while living with the virus. It’s no longer a death sentence. It’s also less hush-hush now. We used to have clients who gave us emergency contacts we could not reach out to unless they were dying.

TM: That’s great. Where do you feel challenged or stuck?

RM: With our HIV-positive population who are living on the street and/or dealing with psychiatric issues.

TD: That’s my major problem with medication adherence. Clients may be sleeping on the couch of someone they don’t want to know they have HIV. Some of them come here to pick up and take their meds for that reason.

TM: Does your agency do housing services?

RM: We assist in filling out applications for various housing opportunities. Our primary focus is medical and mental health.

TM: What would you do with more money?

TD: I definitely would try to start some form of directly observed therapy [when patients take their meds in front of someone else, to ensure adherence]. Also, our outreach and PR is not enough. A subway campaign would be nice, but that’s a dream.

RM: Our clients have a multitude of issues, and our staff has to be expert in everything. So I would like to see specialized teams of staffers with the highest education about HIV—all the newest trends, meds, services.

TM: Can you tell us some stories that illustrate the work you do?

TD: I have two successful stories. One was a challenge that became a success—a client who was infected with HIV at birth and now, in his early 30s, he was not taking his meds consistently. I think he was just tired from taking meds all his life. He came in one day looking like he had AIDS and lots of opportunistic infections. We took him straight to the ER. He was scared to go by himself. Our care manager picked him up that morning and stayed with him in the hospital all day. His viral load was so high. His care manager worked with him for seven months—he was in the hospital for three months. And then he went into a [single-room occupancy] residential building. Now he’s virally suppressed and just signed a lease on his own apartment last month.

Another story is about a lady I worked with for two years. She got HIV through unprotected sex, and she came to a point where she was not virally suppressed. But she would have multiple boyfriends and not tell them that she was HIV positive. She went through two different care managers. She was bounced out of two different housing facilities due to her having sex without disclosing her status. She was told that if that happened again, she’d be kicked out of NYCHA [New York City’s low-income housing]. So now she’s virally suppressed, and she disclosed to her last boyfriend. I had to have a very stern conversation with her. I think she didn’t fully grasp U=U [the fact that if you are on meds and undetectable, your virus is untransmittable to sexual partners].

TM: Thanks. Romy, do you have any stories?

RM: We have to remember that so many of our clients have so many different things going on. For some of them, HIV is low on the list. Your housing could be in jeopardy, you have personal relationship issues, your mental health is unstable. So it’s about helping them put the pieces of the puzzle back together one at a time.

TM: The Bronx lags behind NYC generally in terms of targets toward ending the epidemic. What will it take for the Bronx to catch up?

TD: The Bronx will be the last borough to end the epidemic. It’s a struggle here. People are very poor. I was raised in the South Bronx. We have a very high high-school dropout rate. So let’s start there.

Positive POV: Justin Toro

We talked to Justin Toro, 33, practice manager for the Oval Center sexual health clinic at Montefiore, who was diagnosed with HIV in 2006.

Justin Toro: I grew up in the Fordham area of the Bronx. I was shy but did a lot of theater and basketball, had the normal confused sexuality and all that good stuff. [laughs] But I had really great parents who made it to every play. When I came out to them as gay, it took some time for them to accept it, but they’ve since fully embraced me and my friends and are supportive of my advocacy work around HIV, LGBTQ people, and communities of color.

Tim Murphy: So you were 20 when you were diagnosed. Had you had any sex ed?

JT: I went to high school in Queens. In the late ’90s and early 2000s, I thought that HIV was a death sentence. I knew there had been a lot of activism around HIV in the city, with ACT UP pushing for access to meds, but I wasn’t diagnosed back then, and unfortunately I called HIV the things I heard it being called—“The Kitty” or “The Monster.” I fell into stigmatizing it. I was a real jerk back then!

TM: How did your diagnosis come about?

JT: I was an undergrad at SUNY Old Westbury on Long Island. I’d gotten a call from the health department saying that someone I’d been with sexually had been diagnosed with HIV and that I should get myself checked out. I’d tested negative twice before that, but this time it came back positive. I’d been in a monogamous relationship with that person, so I’d thought there was no need to have the HIV conversation. I hadn’t had any education about how to have a conversation about condoms. It wasn’t even in my mind. I thought, “This is my partner and I trust him and everything is good, so we’re fine.” We broke up the day I found out I had HIV. According to him, he’d had no idea he had it and was so scared of telling me, he had the health department do it.

I was shocked. The nurse had to show me the test and explain it to me. I was angry, sad. I laughed, thinking how unreal it was that I was now just a statistic and that I was gonna die. It wasn’t until college that I’d started getting exposed to more sexual health information, testing, condoms.

TM: So what happened next?

JT: I got engaged in care and had a great social worker. I always tell her she saved my life, because I was thinking, I’m not gonna have a future, a family. She checked on me once or twice a week to make sure I was going to classes and taking my meds. I had a million and one questions, but my doctor was great and explained everything. I got involved on the youth advisory board at the hospital. And that social worker convinced me to get my master’s in social work so I could help other newly diagnosed people.

TM: Did you tell anyone?

JT: At the beginning, no. I thought my mother found out two years later during an ER visit when the nurse said to me in front of her, “How long have you been living with HIV?” But actually she then told me that she’d found my test results in my drawer and was waiting for me to approach her. She said she had friends who’d been in the “gay lifestyle” who died from HIV, and she’d always worried about them.

Then I did an interview with [openly HIV-positive RuPaul’s Drag Race alum] Ongina and disclosed to her. I didn’t know it would be televised, but the next season of Drag Race, there I am talking about living with HIV. I started getting supportive text messages, but they were mixed with people saying, “I had sex with you six years ago ... why didn’t you tell me?” I said, “Dude, I didn’t even have HIV six years ago!” It pushed me out of the closet. I figured, OK, the world now knows, so it’s time to do something with it.

So I started working with Love Heals, which works with young people and the NYC department of education to provide HIV 101, one of six mandated sex ed lessons in schools. I would ask how many knew someone with HIV. Then I would say, “Well, now you all do, because I am.” They’d be dumbfounded. They’d say, “But you don’t look sick.”

So then I joined the NYC HIV Planning Group, which exposed me to the greater work around HIV in NYC and New York State. Unfortunately, I got laid off from that. But a colleague from the group got me a job working at Montefiore per diem. Six months later, I switched to full-time, doing outreach and testing. And amid that, I went to Hunter College and got my master’s in social work so I could do program management and grant management. I’ve been in my current job two years.

TM: What do you do on a daily basis?

JT: The center is for any individual 16 and up who needs HIV and STI testing, PrEP, etc. We do a lot of transgender care, whether it’s mental health or surgeries or hormone therapy. It’s a stigma-free place for individuals to get sexual health care in a discreet, LGBT-friendly location. We’re a one-stop shop for all things sexual health.

TM: What do you hear from young people in the center about what they know about HIV and other sexual health info?

JT: It’s mixed. A lot will have gotten their six mandated lessons in school, but some only had one lesson. They’ll say, “My math teacher was our sex ed teacher and didn’t know much themselves.” We have to break it down with them and say, “These are your risks—let’s talk about how you can do it safely and involve you in your own care,” because the more people feel involved, the more they stick to it.

TM: Are you seeing a lot of crystal meth use among young MSM and trans women of color?

JT: Unfortunately, meth use is very large in that population, and there aren’t many agencies doing a good job with it. There aren’t many inpatient rehabs that I know of accessible to people who don’t have insurance. On top of or mixed in with that, you have mental health issues, homelessness, food insecurity. Medical issues can be the last thing on people’s minds.

TM: Can you tell us anonymously about some of your clients to illustrate the work you do?

JT: We have a young man, a survivor of the Pulse mass shooting, working with our mental health therapist to talk about his post-traumatic stress disorder. He’s living with HIV, but his forefront issue is not being able to go to a club or social settings.

Our youngest client just turned 17. He was on PrEP, but he discontinued it, and within six months he got infected. But he has underlying insecurities of housing and sexuality. He was on his parents’ insurance—the prior agency he was with didn’t navigate him correctly [through PrEP adherence], so he fell through the cracks.

TM: So you probably heard that NYC just announced it’s the first city in the U.S. to reach 90-90-90 (90% of those with HIV knowing their status, 90% of them in care and on treatment, 90% of them virally suppressed).

JT: So they say. In the past two weeks alone, I’ve given five new HIV diagnoses. To me, that is saying that we’re not doing everything we can. We should be able to go six months without giving a diagnosis. Until people are adequately housed and given mental health therapy ... there’s not enough mental health support for young MSM of color.

TM: I know of several places throughout the city that do that.

JT: Some places have a 1-to-250 ratio of therapists to clients, which is unrealistic to treat someone well.

TM: What will it take to fully end the HIV epidemic in NYC?

JT: Adequate education starting in the younger years. We need to engage families in doing a better job in educating them. We need more safe shelters for people experiencing homelessness—drug-use free, with no holes in the wall and adequate food and heat, no roaches.

TM: What are your own life goals?

JT: I’m hoping to go back to school to become a nurse practitioner and really dive into the realm of transgender health care.

TM: What do you do for self-care and joy?

JT: I do volunteer work. I’m on two boards of directors, the Latino Commission on AIDS and Out My Closet, where we take clothing donations and go to different LGBT spaces in the city and provide pop-up shops where young LGBTQ people can dress for job interviews and get education around [the job-seeking process].

I also travel as often as I can to any beaches available to me—recently it was Puerto Vallarta in Mexico and also my homeland of Puerto Rico. Anywhere I can get in the sun—that’s my energizer. Day to day, I cuddle with my dog and watch Family Guy and play video games.