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 Queens County, New York
Boasting residents from more countries than any place on Earth, Queens reflects New York City’s dramatic drop in HIV rates — but gentrification, homelessness, drug addiction, and the fear immigrants feel when seeking services in the Trump era still present hefty challenges to stopping the epidemic.
Need-to-Know Stats About HIV in Queens
In 2017, Queens, which makes up about a quarter of New York City’s total 8.6 million population, had 400 new HIV diagnoses — 19% of the city’s 2,157 total that year. Of those, 323 were in men and 73 were in people who also had a simultaneous AIDS diagnosis.
Rates of new diagnoses in Queens have decreased steadily between 2013 and 2017, as they have in the city overall. Rates in that period were highest among Latinx residents, then black residents, followed by Asian and white residents. Rates in that period decreased somewhat among Latinx and whites, rose slightly for Asians, and fluctuated among blacks.
In 2017, people born outside the U.S., especially those from South America, made up half of new HIV diagnoses in Queens.
In 2017, Queens had the lowest death rate in the five boroughs among those living with HIV/AIDS.
In 2017, 68% of Queens residents with HIV reached viral suppression via treatment within six months of diagnosis — a slightly higher rate than in New York City overall.
Among Queens people living with HIV/AIDS overall (not just new diagnoses) in 2017, 78% were virally suppressed. Whites had the highest rates of viral suppression (92%), followed by Latinx (86%), Asian (85%), black (78%), and multiracial (54%) people.
Successes and Challenges Facing HIV Service Providers in Queens
We spoke to Rosemary Lopez, executive director of AIDS Center of Queens County (ACQC)
Rosemary Lopez: I’ll be executive director here for two years come January, but I’ve worked at the agency for 26 years. I used to be associate director of programs. We had six programs when I came on, and now we have 32.
I started working in HIV about 30 years ago, when a lot of my friends started to get sick. I was working in a public hospital as a social worker on a drug detox unit. People were coming in HIV positive, heroin-addicted people who were sharing needles, and being segregated on a different unit. Nobody wanted to see or touch them. The nurses and doctors were afraid of them, and I was in charge of training them about how to treat someone coming in who’s HIV positive, because at that time, kitchen staff would leave their food at the door and family members or friends would have to bring it in to them. I had to teach staff that you can’t get HIV from casual contact. From there, I moved onto the immunology team, serving mostly HIV-positive people.
Tim Murphy: What’s the origin story of ACQC?
RL: It was started by a group of well-intentioned community members noting that friends and family who were infected with HIV were too sick to travel to Manhattan for services. So we started in a small storefront in Richmond Hill 34 years ago, donated space on the second floor. People said, “Get out of here, you’re bringing AIDS and gay people into the community.” Our windows were broken. But right after that, we got a grant from the AIDS Institute [which oversees HIV/AIDS policy and services for New York State] and opened another site in Rego Park. We had a very well-intentioned board for many years that helped us get additional grants.
TM: Can you tell us about ACQC today?
RL: We’re the number-one HIV/AIDS services provider in Queens. We’re based in Woodside, but our main site is in Jamaica [Queens] and we have five other sites, including a harm reduction/syringe access site and 50 transitional beds serving people experiencing homelessness. We also have a mobile prevention unit offering HIV and STI [sexually transmitted infections] testing in Jamaica, and a site in Far Rockaway.
Four years ago, we affiliated with AIDS Healthcare Foundation, which is allowing us to have medical care and a pharmacy on-site in Jamaica. Previously, we had a link with New York Hospital of Queens, then the doctor retired and it took us ten years to get another medical provider. So AHF runs our medical and pharmacy, and we run all the support services. We have a mental health clinic. We service, in each of our primary sites, 150 families every week. We give food to 450 families a week.
We’re not just an HIV/AIDS organization any longer; we service the chronically medically ill, the actively substance-using, the community at large. An hour or two before our community food pantry opens, there are lines around the block, there’s such a need.
We have an LGBTQ homeless drop-in center in Woodside that is totally funded by City Council dollars. The homeless kids come to us to sleep, shower, and eat. We try to help them get into college, work settings, permanent housing. We have 130 apartments that we rent.
We touch over 15,000 people a year through mobile testing at churches and schools. We have more than 3,500 HIV-positive clients and a little more than 2,000 chronically medically ill clients. We have an HIV-specializing nutritionist and food pantry. We have an active syringe-exchange program. We have about 50 transgender clients who come to our Woodside site on Friday night for syringes for hormones.
We have about 150 full-time staff and 25 part-time, plus about 25 volunteers. Our annual budget is close to $14 million. We’re federal-, state-, and city-funded. We have no private or corporate donors, but we need them! We’re planning a fundraiser for our 35th anniversary next year.
I’d say the staff is about 75% people of color. Our staff represents our client base, so we have a lot of people who speak Spanish, Haitian-Creole, and Tagalog. We’re about 25% to 30% LGBTQ, about 15% to 20% living with HIV/AIDS. We have transgender staff too, around 3%, but they tend to come and go.
Overall, the clients are about 45% Latino, 45% African American, and the rest is other [ethnicities]. We service a large MSM [men who have sex with men] population, and also lots of undocumented immigrants.
TM: Are you finding in the Trump era that immigrants, especially undocumented ones, are afraid that coming in for services will put them on the radar of immigration authorities, or will jeopardize their immigration status down the line because of Trump’s court-blocked “public charge” threat to penalize immigrants who access public services?
RL: In the last eight months, we’ve noticed that people have been afraid of getting tested or signing HIPAA [legal privacy] forms. We had a woman from Ecuador who disclosed her fear of providing a home address or phone number prior to getting HIV-tested because she was afraid that DHS [Department of Homeland Security] or ICE [Immigration and Customs Enforcement] would come to her house. That information goes into our own system, which goes to the state [health agencies]. We’re hoping it’s protected [from federal immigration authorities]. We would try to block them from getting it with our own bodies.
We had an undocumented gay Colombian man come in from Jackson Heights. He was interested in PrEP [pre-exposure prophylaxis] but he was in fear of providing personal info, and that’s what stopped him from getting it. Another HIV-positive client, from Mexico, every time he watches the news related to immigration on Telemundo, he’d get scared thinking that HASA [city agency that provides rent and housing assistance to low-income people with HIV/AIDS] was going to cut him off. We have another client who stopped taking PrEP so it wouldn’t interfere with his asylum case, which is based on him being at risk for HIV.
I can go on and on with stories like these. We’ve probably lost about 10% of our clients because of this. Our staff is in the trenches out there hearing them. We have legal services, also.
TM: What do your staff say to reassure people?
RL: They tell them that they will not divulge this information, but when you’re applying for certain things, your name has to go in there.
TM: How would you describe the HIV situation in Queens overall?
RL: The city’s prevention efforts are really working, and the rate of new diagnoses has dropped from 2013 to 2017 [most recent year of data]. Among New York City boroughs, the Bronx carries the burden at this point. In Queens, our cases are mostly in Jamaica, Far Rockaway, and Jackson Heights.
TM: So what would you say are your biggest challenges?
RL: Housing. We get HOPWA money, yes, but everything here is getting gentrified, and rents are sky-high. We housed 70% of clients 15 years ago; now we’re lucky if we can house 30%. We have to move people to the [cheaper] Bronx, but then they lose services from us.
Also, the opioid epidemic is sky-high in Queens, mostly affecting communities of color. And a lot of our young MSM clients in our transitional housing program are using crystal meth. We have a harm reduction program that is open to people who are actively using. It doesn’t mandate that they go to treatment.
TM: What would you like to brag about?
RL: The expansion of our housing program. We have 130 apartments of our own, and we also do housing placement assistance. Housing is our clients’ number-one need. If they don’t have a place to live, they’re not taking their meds the way they’re supposed to. The homeless population is huge.
The ideal solution would be more housing that we can own, buildings we can manage and put mental-health services on-site. We’ve been looking at properties, but they’re so expensive, and often they’re already bought by private vendors. Ten years ago, we had a grant to buy property for residential use, but we had to give the money back because we couldn’t find anything. People would come behind us and buy the buildings for all-cash. It’s gentrification and it’s bad, really horrible.
TM: Any stories you’d like to tell?
RL: During Christmas, I had a father and five-year-old son come in who’d just arrived from Mexico. The father had HIV and the mom died from HIV. So they came in and I said to the boy, “You can pick any present you want from under our tree.” And he asked, “Can I have that can of corn?” That is just the saddest, that a little boy would rather have something to eat than a toy because of food insecurity.
Here’s another story: We had a client in Flushing Meadows Park who was homeless there for 20 years and came into our transitional housing program. Now he’s in permanent housing and he’s working. We have a lot of what I would call “the invisible homeless.” Like the young people who come into our homeless drop-in center. I would not think that they’re homeless when I see them on park benches. Then I realized, “Oh my God, these kids are out there all night.” They’re coming to New York like it’s their safe haven from Kansas, Virginia, Florida, where their families reject them.
Positive POV: Robert Steptoe
We spoke with Robert Steptoe, ACQC Far Rockaway site director, diagnosed with HIV in 2001.
Robert Steptoe: I was born and raised in Jamaica [Queens] and now I live in Hollis. I believe I was diagnosed in 2001. I was working with the developmentally disabled population in Queens. I was going to get married to a woman, so I went to take a blood test and it came back HIV positive. I’d had unprotected sex with women when I was young, but I was still shocked and devastated. I thought my life was over, and I did not tell my family. Only my fiancée knew. She took it well because her prior fiancé had died from AIDS. She knew more about it than I did, which is why she kept pressuring me to take the test in the first place.
So I continued to work but had to quit because I got sick. My CD4s were 54. I was the doctor’s first HIV patient and he prescribed me [the infection prevention drug] Bactrim, and I got sick from it.
So my fiancée and I looked in the Yellow Pages and found that ACQC was located in Rego Park. I’d lived in Queens my whole life and had no idea this agency existed. So this beautiful voice answered the phone and, after I told them my name, said, “Robert, you’re going to be OK.” And that did something in me, because I thought I was going to die. So I made an appointment and came in and, via case management, they linked me to services I knew nothing about, such as medical care and HASA, which gave me rental assistance.
Then I started volunteering here, then applied for an entry-level job here called community follow-up worker. I would follow up with clients, assist them going to their medical and HASA appointments. After that, I went back to school to get my bachelor’s. I just got my fifth promotion here. I am now the director of the very department that helped me as a client.
My fiancée and I got married in 2002, and we’re still together after 17 years. We adopted two boys from Haiti, biological brothers. One is in college now and one is in middle school. Just to show you that life goes on [after an HIV diagnosis]!
TM: What do you like most about your job?
RS: I love helping people. I feel that I understand the role of the client and how scared they can be, because I thought I was going to die. I don’t share my own story [with clients] unless it’s necessary. I look to God to tell me when the moment is right. It’s been a marvelous experience. Even people I grew up with, I’d say to them, “Look at me.” [To say, “This is what HIV looks like.”]
TM: Have you experienced stigma or discrimination?
RS: Sort of. That scared me for a moment, but I snapped out of it. My wife is a minister and I’m active in the church, and church people definitely discriminate. I don’t go around saying I’m HIV-positive, but if the opportunity comes up, I will. I’m not ashamed, but as with any disease, it’s up to the individual [to decide when to disclose]. I’ve never wanted to be a token, and I’ve seen a lot of agencies that use clients that way.
TM: How would you describe the HIV situation in Queens?
RS: We still have a lot of work to do. Far Rockaway is considered one of the highest-risk areas [for HIV] in Queens, and there’s still huge stigma here. People still need to be educated. And substance use impacts the issue a lot too.
TM: What group would you say is most impacted by HIV in Queens now?
RS: I think the transgender population and LGBT youth. People still have stigma against their sexual preference. Their own parents kick them out. How can anyone do that to their child? And with the trans population, people are still not accepting them. They can’t find jobs so they have to sell their bodies in the street.
TM: How would you describe or sum up your life at this point?
RS: My family is from Louisiana, and one of the most delicious dishes is gumbo. And I base my life around gumbo. All of my hurts and pains and everything I went through, all my heartaches and breakups — I’ve taken all that and I’ve made it into a pot of gumbo. And my life is delicious!