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 Philadelphia County, Pennsylvania
Black folks bear the HIV burden in the nation’s poorest large city, but rates have been dropping for years—and efforts to bring viral suppression to 90% continue.
Need-to-Know Stats About HIV in Philadelphia County
- New HIV cases in Philly, where nearly 20,000 people total live with HIV, have been on a steady decline since the mid-2000s.
- In 2017, the population of those living with HIV in Philadelphia was 64% black, 17% white, and 15% Latinx. The city overall is 44% black, 36% white, 13% Latinx, and 7% Asian.
- Between 2013 and 2017, new HIV diagnoses in Philly were overwhelmingly black (70%) and male (80%). Among men, 68% of those cases were in men who have sex with men (MSM), while among women, 73% of cases were through heterosexual sex.
- In 2017, 255 transgender women and 27 transgender men were living with HIV in Philly.
- In 2017, among those newly diagnosed with HIV, 86% were linked to care within a month—but less than half of all people with HIV in Philly were retained in care, and just above half were virally suppressed. (However, there were no racial disparities among those rates.)
- Between 2016 and 2018, new HIV cases among those who inject drugs nearly doubled, to 59.
Successes and Challenges Facing HIV Service Providers in Philadelphia
We talked with Gary Bell, executive director of BEBASHI, an HIV services and prevention agency.
Gary Bell: I’ve been the E.D. here since 1996. Before that, I ran the HIV program at Episcopal Community Services. I am HIV negative.
BEBASHI, which stands for “Blacks Educating Blacks About Sexual Health Issues,” was founded in 1985 primarily to address the impact of HIV/AIDS in communities of color, particularly African Americans. It was founded by Rashidah Abdul-Kabeer, who was an infectious disease nurse at Einstein Medical Center here in Philly. She would see a number of HIV-positive people of color coming in, and she would not hear about any efforts targeting that population, so she reached out to several different people to have a conversation around a kitchen table about what they were seeing, and from that meeting, they launched the organization—very humble, grassroots beginnings.
A local health care workers’ union lent them some space. Mostly they did street outreach, going places where they felt people were most at risk—crack houses, parks—giving out condoms, bleach kits [to clean needles and other injection-drug paraphernalia], and info flyers.
Then in 1988, the CDC [Centers for Disease Control and Prevention] released some funds for AIDS agency capacity-building, and BEBASHI received a large grant for five years that allowed it to get its own space and hire staff. The next big development was that the new Ryan White CARE Act [passed by Congress in 1990] made funds available for case management for positive people. I came on in 1996. In 1998, we were in Center City, and we didn’t feel we were reaching the people our mission centered around, so we moved to a bigger space in North Philly and started some other programs, including what is now our largest program, the food pantry.
Tim Murphy: Can you tell us some basics about BEBASHI?
GB: Our annual budget is a bit over $4 million. Our biggest funder is city and state grants that come down through the feds. We also have [revenue from] a 340B [Medicaid pharmacy] program. Then we do some third-party billing. The rest is foundations, corporations like Gilead and Citizens Bank, and individual donors, including Mel Heifetz, an LGBTQ activist who has donated millions to AIDS agencies in Philly.
We have about 47 staffers, about 70% African-American, 20% white, and the rest Latino and Asian. I know of five LGBTQ folks on the staff, but it might be higher—we don’t ask, and not everyone is out. We have one person I’m aware of living with HIV and one trans staffer. Women make up about 75% of the staff.
Annually, we serve about 1,000 people living with HIV, most through case management and our food pantry. But we touch roughly 20,000 people annually—about 3,500 via the food pantry, 3,000 via HIV and STD testing, thousands more through outreach. We do a lot of educational workshops in the community.
About 95% of our clients are African American: 65% male and 35% female. Men who have sex with men [MSM] make up about 15% of all our clientele. Our injection-drug using [IDU] population is very small, less than 5%. Prevention Point, in Kensington, the epicenter of the opioid epidemic in Philly, does more work with IDUs. But we’ve taken steps to becoming more visible in the IDU community, because HIV rates there are going up. Generally, our clients are all over the city—the poor parts.
We serve probably about 20 to 25 transgender women a year.
TM: Tell us about HIV in Philly right now, via BEBASHI and more generally.
GB: I think we’ve made a great deal of progress. We’re seeing a reduction in the number of people diagnosed with HIV each year. The majority of them are still African Americans, with men who have sex with men the highest percentage. The challenge is keeping people in care. So many of our clients live in poverty and struggle with daily needs like stable housing and hunger. We’ve done a pretty good job of getting people into care and covered by insurance. Stubbornly, about 10% of people in Philly are still not covered. This is the poorest large city in the U.S., with a 26% poverty rate that’s disproportionately people of color. We keep about 50% of people with HIV in care, which is the national rate, but it’s not good enough.
TM: Can you break down your gamut of services?
GB: We have two main components. One is prevention, including outreach, education, and workshops, which we do in drug rehabs, schools, etc. Also testing for HIV, STDs, and hep C. We refer people elsewhere for PrEP [pre-exposure prophylaxis]. We actually have a non-HIV primary-care medical clinic on our premises, a partnership with Miriam Medical Services. And we also have a physician’s assistant who does HIV primary care as well as PrEP and hep C care.
The other component is HIV case management. We have about 16 case managers to help people stay in care, but of course that leads to so many other issues. We don’t provide housing, we just make referrals.
Our largest program is our food pantry, which also includes “ready meals” for people who don’t have anywhere to cook or prepare food. We have five community outreach workers who go into North Philly, mostly, to tell about the pantry. We also started pop-up pantries in schools in low-income areas.
We also have programs targeting the LGBTQ community. The Trans Necessities Closet targets trans folks. It’s a large closet with a variety of things, like binders, make-up, and clothes. It’s a safe, private setting for trans folks to try things on and feel comfortable. And we have our HYPE program, which targets LGBTQ black and brown youth. We have a “Kiki Lounge” once a month, where 80 to 100 youth eat, listen to music, vogue, have a great time and also are referred to linkage services for things like PrEP. Sometimes we have free haircuts. Then we have [voguing] balls, about two or three a year. We work very closely with the ballroom community, training people within it to train others on sexual health.
TM: You’ve already listed several great things you do, but brag some more about progress in recent years.
GB: I think the most important step has been stabilizing our financial situation, because for so many years we struggled. But now we’ve stabilized, so we can do things like a forthcoming strategic plan to expand our infrastructure, hire an HR person, upgrade our computer systems. We did it through diversification of funding. For so many years, the majority of our money was governmental, so both the 340B [Medicaid pharmacy] program and reaching out to corporate and private partners has been instrumental.
I would also brag about our LGBTQ services. We’re not an LGBTQ organization per se, but a lot of our constituents are, whether they say so or not. For many years, I don’t think we made enough of an effort to target that community’s needs. But now with the Trans Closet, the Kiki Lounge, and our ball activities, including putting on our own balls, I think we’ve turned that corner.
Another area we’ve moved into is criminal justice. In conjunction with Philadelphia Lawyers for Social Equity, we’re involved in the Pardon Project. These lawyers are training our staff to help people fill out applications for about 300 criminal pardons a year that the governor signs, which is the only way to get your record expunged. Say you did something when you were 21, did your time, and now you’re 40 and you can’t get a job because of your record. I talked with a gentleman who runs several supermarkets in the area and has managers making $50,000 to $60,000, but they can’t get a lease or a mortgage because they have a record.
TM: In Philadelphia, as in so many places, HIV rates remain highest among young MSM of color. What’s the greatest challenge there?
GB: Reaching them. If you’re trying to reach people with a criminal record, you can go to prisons and halfway houses, but when you’re talking about young MSM, you have some folks who are open and some who aren’t. We’ve had some success reaching them via the ballroom scene, but that alone won’t do. You’re also dealing with high levels of substance use and depression.
TM: Have you seen a rise in rates of crystal meth use among young MSM of color, as some other cities have?
GB: No. I’d say that weed and alcohol are more often the drugs of choice in that community here.
TM: So where do you feel stuck and frustrated in your work?
GB: Keeping clients in care, as I said. Often they’ll only reach out to us when there’s an emergency. Engaging them in [ongoing] care is a harder relationship to build, but the underlying reason is poverty. You help a client make a plan for themselves, and then they get evicted, lose their ID, get picked up for a parole violation. You work so hard, but often you don’t feel like you’re moving the needle to get the person into a more stable situation.
TM: Is housing a big issue in Philly, as many HIV services providers have said it is in other cities?
GB: It’s the number-one issue. It’s very hard to climb out of poverty if you don’t have a stable place to live. There’s some limited housing in Philly dedicated to people living with HIV, also some scatter-site housing, but the waiting lists are long, and not just for housing for people with HIV. Section 8 here has an eight-to-ten-year waiting list. It’s very hard to get people into those systems. So in the meantime, you do what you can do to find a room for people. With gentrification, there’s less [affordable] housing available. There’s a lot of abandoned housing around the city, and I wish we could come up with more creative ways of making it available.
TM: What are your goals, and what would you do with more funding?
GB: I’d use it for more housing with wraparound services, finding ways to help people be more self-sufficient via services like job readiness, financial literacy—or literacy, period. With housing, unless it’s completely free, they have to come up with some rent, and unless we help them gain other tools, they’ll be back in the same boat. We get people into subsidized housing, and then they lose it because they use money for their rent, which is peanuts compared to what it could be, for something else. And suddenly they’re three months behind in their rent.
TM: Would you want to open up your own housing units?
GB: I don’t have a ready answer for how we’d use more housing funding. Years ago, we were involved with a group that had housing for people living with HIV, and it was a nightmare, because of security, drug use, neighbor complaints.
TM: You’ve been working in the fight against HIV for a long time. What has and hasn’t changed?
GB: With all the treatment advances has come hope, even if we don’t have a cure. But what hasn’t changed to me is stigma and ignorance. We’re still having the same conversations with clients about family or friends who make them eat off paper plates or won’t hug or touch them.
TM: Why do you think the misinformation and stigma persist?
GB: Fear. If you don’t want to think about something, if it’s sight unseen, then it doesn’t have to be real to people. With young people, we ask them if they want condoms or to consider PrEP, and they say, “No, I’m good.” What does that mean? There’s a lot of ignorance. We have to keep getting in people’s faces, on the radio, in articles, going to churches, frat houses, schools, constantly repeating that this isn’t just a gay disease, isn’t a death sentence, you wanna get tested and you wanna know your status. My wife knows someone who found out their relative was HIV positive, and the family didn’t have the foggiest notion of where to go for help.
TM: Do you think this is the government’s fault?
GB: Absolutely. Look at TV. Do you really see or hear stuff about HIV? No. Yes, I see more posters about HIV than before, but it’s not enough of a robust public information campaign.
TM: Tell me a few stories that bring to life these issues in your work.
GB: We had a gentleman living with HIV, a client who came up from a rural part of the South where there were no organizations like BEBASHI. His family brought him here. I hadn’t seen someone who looked that sick in a long time, wasted and pale. We got him into care, but his immune system was already so compromised that he died recently.
We had another gentleman who was bad off, 3 T cells and viral load through the roof, active TB, so he went to the hospital—and they released him without any medication. They told his family, “We don’t think he’s going to be compliant, and we’re not comfortable giving him all these meds.” So the family called us, and we got him to a different hospital, where the doctors said that he reminded them of patients they had seen while working in Africa. That hospital treated him, and he’s still alive, last I heard. There are still so many people in 2019 who aren’t getting the care they need.
Also, we had a group of women who came from South Africa several years ago to observe us. We told them that our hardest problem was keeping people in care, and they could not believe it. They’d heard that everyone here had meds. They couldn’t understand why someone who had meds wouldn’t take them, because they were working with so many people who were waiting for meds. I told them that it was because of social determinants, poverty, substance use, racism, trauma, people not valuing themselves. It’s complicated.
Positive POV: Raymond Hayward
We talked with Raymond Hayward (“Spelled like Susan Hayward!”), 65, of West Philadelphia, a BEBASHI client and community volunteer. He was diagnosed with AIDS in 1983.
Raymond Hayward: I’m on disability. I go to the Unity Fellowship Christ Church of Philadelphia, an [LGBTQ-] affirming church. Our pastor, Jeffery Haskins [previously profiled on TheBody], is also living openly with HIV. I’m also a military veteran, so I do some things with the Philly VA, trying to reach their HIV population. I fill my days with fun activities, like coming to BEBASHI for support groups and reaching out to people in my neighborhood who still don’t really understand what this whole AIDS thing is about.
I’m single. You tell someone you’re HIV positive and then wait for the phone to ring! I live in subsidized housing. I have friends who have to pay only $15 in rent but go out and get high with that $15 and then get evicted.
Tim Murphy: Raymond, tell us about your personal journey with HIV/AIDS.
RH: I had an AIDS diagnosis in 1983. I had thrush—that was the first real sign. As a man of color in Philly at that time, we were hearing about this disease in New York and California that I thought only affected—excuse my language—faggots. I thought, that’s not gonna happen to me. So when I got the thrush examined, they did further tests. I was going to re-enlist in the military, but the military had said I couldn’t because there were some issues in my bloodwork. Then I was diagnosed with Kaposi’s sarcoma. That was the real stamp that I had AIDS.
I was about 29. I was devastated. My mother was a double amputee from diabetes—I had to give her her daily insulin. So it was surreal that I got this news while I was trying to take care of her.
Then I got involved in crack and woke up every day to drink from a bottle of rum beside my bed. I didn’t care. I thought I was going to die anyway. But then I had an epiphany: There’s gotta be something better for me. My mother needed me. I realized it could be me laying in that bed. I went to a couple NA [Narcotics Anonymous] meetings, but I had a problem standing up and saying, “Hi, my name is Raymond and I’m a drug addict.” But eventually I stopped anyway.
Anyway, I didn’t die. I kept waking up every morning. I thought, Hey, I can have a life. I’d gone to a few HIV organizations, but I didn’t see any other men of color. Then someone said, “You should come to BEBASHI—they have support groups.” I didn’t want to sit around and tell everyone my business, but finally I came. The room was 100% black, men and women, and I thought, Whoa, these people are going through the same thing as me. I felt kindred to them. People said that their relatives wouldn’t let them see their nephews and nieces, touch the silverware or glasses.
I worried about infecting my mother because I gave her her insulin. I was super-cautious. One time, after I’d told my mother about my HIV, she saw how bitter I’d become, and she said, “I don’t know what’s going on with you, but I’m not the one who gave you HIV!” She died in 2009, and I wondered, Who do I take care of now?
TM: What do you think you derived the most from BEBASHI?
RH: Self-worth. And the fact that my being a long-term survivor means something to the organization, because people come and go here. I’m in it for the long haul, because you never know who’s gonna come in that door with a question. BEBASHI has empowered me with the ability to meet people where they’re at.
TM: What would you say to a newly diagnosed person?
RH: Look at me! I just turned 65. I’ve had HIV longer than you’ve been alive. So you can deal with this—it’s manageable.
TM: What do you make of the HIV situation in Philadelphia?
RH: It’s scary. I have an issue with U=U. I don’t believe it.
TM: Despite all the researching confirming it and the fact that major world health agencies have signed on to it?
RH: I still think people need to be cautious.
TM: What do you make of your life so far?
RH: My purpose is to serve. I used to be a certified nursing assistant and a medic in the Army. I try to give back and educate people and break down some of the stigma [about HIV] that still exists today. I’m also a cancer survivor and have had two heart attacks, but through it all I tried to let people see that you can still live if you do the right things.
TM: At the top of our call, you mentioned ageism. What about it?
RH: Oh you know, hearing, “She’s just an old queen,” that kind of thing. I want to think I look 21. Everyone is so geared toward youth. I didn’t realize that until I got older. Nobody really has time for us older people, but we have a lot to teach. Sometimes when I come to BEBASHI, the young people say, “Oh, hi, Mr. Raymond.” Just say Raymond! I don’t have the cane out yet!