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 New York County (Manhattan), New York
As New York City touts numbers showing a near-end to its four-decade epidemic, Manhattan’s HIV population is divided between middle-class gay men and a low-income, Black and Brown and heavily immigrant community in Harlem struggling with more than the virus.
Need-to-Know Stats About HIV in Manhattan:
- Annual HIV diagnoses in the borough have plunged from more than 1,500 in 2001 to 375 in 2018—reflecting a similar plunge in New York City’s four other boroughs.
- Those 375 diagnoses were the lowest of all the boroughs, except for Queens, which had 358, and majority-white and middle-class Staten Island, which had 31 diagnoses. (Brooklyn’s 558 diagnoses were the highest.)
- Most of Manhattan’s HIV diagnoses in 2018 were in Harlem, the borough’s poorest and Blackest area, as well as in the affluent and heavily gay West Side (Hell’s Kitchen, Chelsea, Greenwich Village) and the heavily Latinx, mixed-income Lower East Side.
- The borough has by far the highest number of men living with HIV/AIDS (27,584) in New York City, likely reflecting Manhattan’s long-established gay population. There are far more women living with HIV in the Bronx (11,629) and Brooklyn (10,123) than there are in Manhattan (5,224).
Successes and Challenges Facing HIV Service Providers in Manhattan
We spoke to Amanda Lugg, director of advocacy and LGBTQ programming at Harlem’s African Services Committee. (Ed.: Lugg recently won Treatment Action Group’s 2019 Research in Action Award.)
Amanda Lugg: I’ve been here since 2000. Before that, I worked on the AIDS Walk at GMHC and was the head chef and volunteer manager at God’s Love We Deliver. I’m of Ugandan-British background.
African Services began in 1981, when the founder, Asfaha Hadera, an Ethiopian refugee, began helping fellow refugees out of his apartment in the Bronx, focusing on basic acclimation issues but also trying to increase U.S. quotas on refugees allowed into the country. Then shortly after that, the AIDS epidemic hit, and people were coming to NYC from highly impacted countries, but nobody was talking yet [about immigrants with HIV/AIDS]. The agency got a free office from the Unitarian Church [Community Church of New York] on Park Avenue and 35th and then got their first outreach grant to do condom distribution—and it grew from there. We’ve now had Ryan White funding for decades.
In 2002, we opened the first of five HIV clinics in Ethiopia, although we had to close two last year due to funding. Asfaha runs the Ethiopian offices, and his wife, Kim Nichols, runs the NYC office. They’re co-executive directors.
We have a $4.4 million annual budget. In NYC, we have 35 staffers. About 65% are African-born, and the others are mostly people of color. We speak 25 languages and dialects, with French being the common one, as many of the staff and clients are from French-speaking West Africa. I think we have four openly HIV-positive staffers. Roughly four of us, including me, identify as LGBTQ. We currently have no trans or gender nonbinary folks on staff.
We have about 300 active HIV-positive Ryan White clients, all immigrants and people of color, about 50-50 male/female, with the majority having gotten HIV through heterosexual transmission. About 60% are Muslim and 40% are Catholic. In my LGBTQ program of about 25 men who have sex with men (MSM), half are HIV positive.
We also touch about 8,000 people a year via outreach, mobile, health screenings, events, etc.
Tim Murphy: Thanks for that overview. Can you break down your gamut of services?
AL: Our largest department is our legal department. It’s grown in the past decade from one attorney to several. We petition for asylum for clients to prevent their being removed from the country. If you can prove you’re low-income, you may qualify for fee waivers. The department also does “Know Your Rights” immigration presentations.
We provide AIDS housing rental assistance via HOPWA. We don’t have direct housing.
We have Ryan White individual and family case management for about 600 HIV-positive individuals, including 150 families where someone in the family is HIV positive. We do linkage to care and treatment. We have very few Medicaid clients, because 99% of our clients are undocumented, so they don’t qualify for Medicaid and get their care and treatment covered through Ryan White/ADAP [AIDS Drug Assistance Program].
Also, our nutrition program and food pantry is available to the general public. We have a full-on kitchen where clients can come in and cook or take cooking classes and hang out all day. We do a lot of food education, such as explaining that lots of/an excessive amount of palm oil is not good for you, even though it’s considered a status symbol back in Africa.
We also offer mental health services, funded by the van Ameringen Foundation. We offer ESL and GED prep classes. And then there’s our brand-new, very exciting queer LGBT health and wellness program, which I run. It’s funded by the New York State AIDS Institute, and it’s not HIV specific, but it is LGBTQ immigrants specific—primarily asylum-seekers from West Africa and the Caribbean. We do a bimonthly support group with health, wellness, and prevention workshops, as well as help on things like job-seeking, resume-writing, and college and GED applications.
TM: Have your non-HIV-positive clients been able to access what NYC announced in early 2019 as “universal health care,” by allowing undocumented immigrants to access care at public health centers and hospitals?
AL: The full program, in which you can have a regular primary care provider, will not go citywide until the end of 2020. They just rolled it out in the Bronx. In the meantime, we have a program where, if you want to see a doctor but don’t speak English or are undocumented, we’ll take you to one of the city hospitals like Bellevue where, for a low fee, you can see the doctor and we’ll do the translating. But before that, we tell you all about HIV and explain that if you test HIV-positive and are undocumented, you can get free medication and treatment via Ryan White.
TM: Do you do linkage to PrEP [pre-exposure prophylaxis]?
AL: Yes, but we have so little uptake. I think it’s because the stigma around HIV/AIDS is still so rife that people think, “If I start taking what everyone knows is an AIDS drug to prevent getting HIV, then people will think that I have HIV.” In my group, the men say, “I have to get other things sorted first, like my immigration papers, job, or apartment—and in the meantime, I’ll wear a condom.” And we leave it at that.
TM: Have you seen evidence of immigrant clients fearful of accessing services because they’ve heard about Trump’s “public charge” proposal to withhold green cards to immigrants who access public services?
AL: Oh God, yes. We’ve had people come in saying, “So if I’m on any benefits, I’m not going to get my green card, which I need to apply for my daughter to come to the U.S., so I want to go off my HIV meds because I’m feeling fine, and I don’t want HASA [New York City housing assistance for HIV-positive people] either.” We were like, “Red flag, red flag!” The public-health implications of that on a national scale are chilling.
So we became the HIV lead on the national campaign called Protecting Immigrant Families, hosted by the National Immigration Law Center in D.C., to coordinate public comments against the impact of Trump’s proposed “public charge” rule. And here in New York, we're part of the last remaining lawsuit to maintain the national injunction [freeze] on the policy—and that freeze is only guaranteed until [this month]. So we may be going to the Supreme Court over this issue.
TM: So this is a rather broad question given that you work mainly with the African and Caribbean immigrant community in Harlem, but how would you describe the current HIV situation throughout Manhattan?
AL: I’m a member of the NYC HIV Planning Council. Overall, yes, the numbers have gone down. Borough- and city-wide, the numbers are still highest among MSM of color, but in our community our highest numbers are in heterosexuals. Many of our clients are Muslim and practice polygamy. It’s great that NYC overall has reached its 90-90-90 targets and that we’re headed in the right direction toward ending the epidemic, but to get there, we will have to comprehensively target and treat the undocumented immigrant community.
TM: What successes in recent years would you like to brag about?
AL: The growth of our legal department. Also, my LGBTQ program, which we started in May 2019. Yes, there are immigrant refugee programs across the city, including at the LGBT Community Center [in downtown Manhattan], but we’re the only place in the city that can provide a safe and life-affirming space in a culturally and linguistically competent way for West African and Caribbean MSM immigrants. Many are coming here seeking asylum [from countries with violence and/or laws against LGBTQ people], so it’s a trauma-informed model—not just your basic queer support group.
As an immigrant dyke who’s been in NYC for 20 years, I’ve wanted to do this work for so long, but people weren’t ready to come in and self-identify as queer. We really saw a shift after the 2012 AIDS conference in D.C., during which many African activists came but never returned to their own countries because of anti-gay laws—and sought asylum here.
I’m proud of the fact that despite Trump’s best attempts to stop us, we here in NYC are still welcoming new arrivals every day—and that this agency remains the first port of call for a range of services, not just HIV-related.
TM: Where do you feel most frustrated and stuck?
AL: Definitely the lack of unrestricted funds. You have to do what the funders tell you to with the money you get.
TM: What would you do with much more unrestricted funds?
AL: It would be great to move someone [HIV-negative who doesn’t qualify for HASA] into an apartment and pay their first three months of rent as well as everything they need to furnish it. Or to help someone pay their college application fees. But you just can’t write a client a check in the nonprofit world. Very few new immigrants can afford to live by themselves. And when people are working under the table for people, or living with people, who know they are undocumented, they are vulnerable to exploitation and possibly HIV. Such as, “Yes, you can live here, but you have to clean, or have sex with me once a week, or I’ll tell immigration.”
TM: What are your agency goals in the years ahead?
AL: I want to increase the people in my LGBTQ program. And to develop a specifically lesbian program. I have three lesbian members. Two of them attended the men’s support groups, and they were horrified. They had nothing in common with these men who have sex with men from Nigeria! These are married women with kids who were beaten and kicked out of their homes back in Africa for desiring women, and now they’re here seeking asylum.
TM: Can you share any stories that illustrate your work?
AL: I have people coming from countries where they can’t be open about their sexuality, then they get here and go on [the gay hookup apps] Grindr or Scruff and, to them, it’s like Disneyland—they can get sex whenever they want. I had a guy telling me he hooked up with someone, and when this guy kissed him goodbye on the train platform, he froze in terror because he’d been kissed by a man in public and was waiting to be arrested or beaten.
Our case managers also deal with female genital mutilation (FGM). We have a client who doesn’t want to send her daughter back to Africa for the summer because she fears that her mother is going to cut [her daughter]. She doesn’t want to go against her family, but she doesn’t want her child to go through that, so she’s asking, “Does this mean my children shouldn’t go home at all?” Clients struggle with coming here and being able to live their lives independently while still being culturally tied [to their home countries].
TM: Amanda, what do you do for self-care and joy?
AL: A lot comes through this work I do. I was just saying to my girlfriend, “I don’t care how much you pay me—I would never move to a think-tank environment. I have to be with people in a direct-services capacity.” That keeps you grounded. You think you have a problem? You don’t know how easy you have it. I feel privileged [to do the work I do].
Besides that, I love going to the beach, watching TV, and cooking. I love food shopping. I go to [the much-talked-about new] Wegman’s [supermarket in Brooklyn]. It’s amazing. Their app tells you what aisle your food is in and how much the whole thing will cost you before you step in the store. I also love watching my girlfriend disco roller-skate. I haven’t tried it yet, but I’ll give it a shot.
Positive POV: Jay W. Walker
We spoke to Jay W. Walker, 52, of Manhattan, who is director of development for the nonprofit Ironbound Community Corporation of Newark, New Jersey. He was diagnosed with HIV in 1996.
Jay W. Walker: I grew up in Hampton, Virginia. I had a very idyllic childhood, but one without illusions about the world, as my mother had been a civil-rights activist in the 1950s and ’60s. She did the 1963 March on Washington, ran guns for the Black Panthers, and was a friend of Malcolm X. I grew up looking at the world through a social justice lens. After high school, I came to NYC to go to New York University, but I hated it and left after a year, working at the big [defunct] Doubleday bookstore on Fifth Avenue, then as the events manager at Brentano’s Bookstore.
The summer of 1996, I started getting sick—weakness, fatigue, fevers, needing to sleep all the time. I left my job. I knew in my gut what it was, but I was in denial and did not test positive for HIV until I ended up in the ER with PCP pneumonia in December. My ex-partner, who was HIV positive, and his then-new partner moved back to NYC from Key West to take care of me. I moved into their apartment for three months and got on the new protease meds, which gave me diarrhea and neuropathy, the latter of which I still have to this day, although not as bad as then.
The following year, I got a job working on GMHC’s AIDS Walk. I was on disability, but GMHC kept me on as a general office worker, at a rate too low to interfere with my disability payments. Then around the time of the Monica Lewinsky scandal in 1998, I had a total nervous breakdown. My life falls totally apart every 10 years or so. I moved out from my ex and was couch-surfing, doing a lot of cocaine. I ended up in a mental ward for a week. My ex-partner called my mom, who came up from Virginia to take care of both me and my great-aunt with Alzheimer’s, who had an apartment in Harlem. We all lived together there. Once I got better, I worked my way up to events manager at GMHC. But when management there got crazy, I left and went into real estate.
But then I made too much to qualify for Medicaid or ADAP, but too little to buy my own health insurance, so I went off meds for nine years. By the summer of 2016, shortly after I got involved starting NYC’s Gays Against Guns (GAG) in the wake of the Pulse massacre in Orlando, I got sick again and also lost my apartment. I couldn’t work or pay my debts. But I finally qualified for both Medicaid and HASA, which led to the apartment I’m in now, in Chelsea. Once I was back on meds and housed, I was feeling much better and got very involved in activism—with GAG, but also with Rise and Resist, Refuse Fascism, and [the political singing group] Sing Out, Louise! Then I got my current job a year and a half ago.
TM: What do you think is behind what you call this “falling apart” every 10 years? Open question: Do you think it has to do with so-called “minority stress” from being Black and gay?
JWW: Probably not. I was really fortunate, because I was brought up without a lot of the direct stressors that a lot of Black people grow up with. I think it’s my own personal psychology. The last time it happened, the lowest ebb right before I turned 50, was the one where I finally realized the pattern. So, hopefully, I’ve broken the cycle by recognizing it.
TM: How are you feeling about your life these days?
JWW: Pretty good. I’m in a good place financially and career-wise, and I’ve done the re-set on things that’ll help me get through the next 20 years. I’ve recommitted in my professional and personal life to my core beliefs, fighting for human rights that my mother instilled in me, and I have a good work-life balance again.
TM: What do you do in your current job?
JWW: Ironbound delivers a host of services to the mostly immigrant population of the Ironbound area of Newark. I’m the development director, and this is the organization’s 50th anniversary, so there’s been a big focus on building a yearlong celebration. I also manage an annual gala.
TM: You were diagnosed with HIV in a big turning-point year, 1996, the year that effective combination therapy finally became available. How much has HIV shaped your life?
JWW: It’s shaped it significantly, in terms of having periods where my earning ability was cut short. It’s definitely affected my outlook on the world, my understanding of the challenges of the American health care system, and my empathy for what people go through in engaging with it. HIV is a very political illness, and having to go through the process of treatment while at the same time working for GMHC, a major HIV/AIDS organization—for me, getting sick, losing access to treatment, allowed me to understand the big picture.
TM: Do you have a take on NYC’s efforts to end its HIV epidemic?
JWW: I think that the city government has been doing a fairly good job of trying to [tackle the epidemic]. It’s been helped by [openly gay and HIV-positive New York City Council Speaker and mayoral hopeful] Corey Johnson. The city has been incredibly open about HIV/AIDS since at least the [late ’80s/early ’90s] Dinkins administration, in many ways thanks to ACT UP and other activist groups. The city’s efforts to “End AIDS,” to be bold, is exactly the right messaging. But there are subcultures within the city that will work against that process. We all know that in certain communities of color, there’s resistance to availing oneself of health care even when it’s available. There’s still resistance among Black men to just get basic health care, for all sorts of reasons, including [the notorious] Tuskegee [government study of the 1930s to 1970s, in which Black men were withheld effective treatment for syphilis].
TM: You are a very busy activist. What are your activism goals for the high-stakes political year of 2020?
JWW: To do everything I possibly can to get Donald Trump out of office. To try to keep gun violence centered in the conversation in whatever way I can. And to continue working with the NYC Reclaim Pride Coalition to create a welcoming, non-corporate alternative [LGBTQ] Pride event for NYC.
TM: What do you do for self-care and joy?
JWW: Spend time with family and friends—karaoke or going to my musical friends’ performances. I occasionally watch a TV show, like How to Get Away with Murder or Scandal. I also love sci-fi and comic stuff. I grew up working in a comic bookstore. I was into fandom before fandom was cool.
TM: Jay, what do you make of your life up to this point?
JWW: You know that song from [the Sondheim musical] Follies, “I’m Still Here”? That’s my fucking mantra.
TM: So you see yourself as a survivor?
JWW: Yes, and as an influencer. Not necessarily in the current social-media sense of the word. But throughout my life, I’ve been a thought leader in whatever communities I’ve been active in.