Successes and Challenges Facing HIV Service Providers in Kings County
We spoke with a team from Brooklyn’s CAMBA agency: Michael Erhard, senior vice president for health and housing services; Angeles Delgado, vice president of HIV and health-related services; Lisa Koffler, assistant director of HIV prevention; Michelle Montgomery, evaluation manager; Kathy de Meij, senior vice president of strategic partnerships; and Rosalinda Roy, program manager for data and special projects for HIV health and housing services.
Tim Murphy: Thank you all for joining us today! So what is the history of CAMBA?
Kathy de Meij: CAMBA started in 1977 in Flatbush, standing for “Church Avenue Merchants Business Association.” A few years later, there was a big influx of immigrants from East Asia, so CAMBA helped them learn English and get jobs so they could support the merchants. That led to other services like education, job skills, and employment, so that’s how CAMBA went from a merchant’s association to a community social-services organization.
In 1989, we were one of the first nonprofits in the area to offer HIV/AIDS services and to proactively train our staff and newly arriving immigrants on safe sex. And in 2001, we were one of only two agencies in the U.S. who agreed to settle HIV-positive refugees.
TM: Great! Tell us more.
KM: Our annual budget is $170 million, and a big part of that goes into housing.
Michael Erhard: Our HIV budget is roughly $15 million.
KM: We serve 65,000 individuals and families annually with 160 programs. We have six service areas: economic development (which includes job skills training), small business services, education, youth development (after-school programs), adult ed, and family and community support. We have 10 homeless shelters, five of which are for families. We also develop our own housing through our CAMBA Housing Ventures. The buildings are gorgeous, and 40% to 60% of those who move in are previously homeless.
We have legal services, with a big focus on preventing eviction.
Our staff of about 2,000 is 65% Black, 15% Hispanic, 9.2% white, and 4.3% Asian, and 5% previous clients of ours.
Lisa Koffler: About half our staff in prevention services are openly LGBTQ. We have no current transgender staffers, but we’re hiring a trans staffer to do substance use interventions.
KM: Our clients are all age ranges, low-income or very low-income, about a third immigrants or first generation [born in the U.S.], more than half women and girls.
ME: We have about 700 HIV-positive people in our HIV services—72% African-American, 23% Hispanic, 5% white or other, 60% male, 37% female, 2% transgender women, 27% LGBTQ, 53% straight.
TM: What about your services?
ME: We have several HIV programs including supportive housing, food and nutrition, supportive counseling and family stabilization, and transitional care coordination. We have 420 units of permanent scatter-site housing that we rent and approximately 40 units of transitional housing, including a 24-hour facility, plus shared apartments in the community. We have New York State AIDS Institute–funded programs for case management that focuses on connecting undocumented immigrants to resources.
TM: Great, what about on the prevention side?
LK: We have several programs, including one specifically for MSM of color called “NaviGAYte,” whose aim is to connect MSM of color to prevention, care, and supportive services. So we do a lot of outreach on the hookup sites and also in areas where MSM hang out, like outside the park or at sex parties. We’re in Flatbush, but we also have an office at the Brooklyn Community Pride Center at Restoration Plaza in Bed-Stuy. We’ve also done a lot of outreach in Sunset Park, on a strip with a lot of peep shows.
We have another program, the Young Men’s Health Project, for young men 13 to 29, in which we do HIV linkage navigation and some evidence-based interventions, condom promotion and the CDC-approved Mpowerment intervention, in which the clients themselves structure social activities. Then we have a program, ARTAS, to get newly diagnosed people into care and treatment as soon as possible.
We also have CDC-approved women’s prevention intervention, WILLOW, which helps women build social support networks, learn to differentiate between healthy and unhealthy relationships, practice assertive communication, and stay in treatment. And we’ve recently taken up CLEAR, an individual-level intervention designed for women at high risk for HIV to work on some of those goals I just mentioned.
We also have something called Project ALY (Accept LGBTQ Youth) to promote greater acceptance among families and caregivers. It’s based on research from the Family Acceptance Project showing that LGBTQ youth who are rejected by their families are many times more likely to experience depression, do drugs, put themselves at risk for HIV, or attempt or commit suicide. We do workshops in the community around LGBTQ cultural competence, showing how to make workplaces more LGBTQ-friendly. We’ve also developed a social marketing campaign on bus shelters throughout Brooklyn.
TM: CAMBA is in an area with a large Caribbean population, which is widely perceived as being very homophobic. How is Project ALY going?
LK: People have a lot of religious beliefs and are often coming from countries where homosexuality is outlawed, so there is resistance, but we try to appeal to people’s fear for the safety of their kids. What gets to people is when, in workshops, you start sharing the stats about how family rejection leads to much higher rates of the things I mentioned. You can hear a silence fall over the room while people internalize that. They still love their kids, and for them to think that what they thought was protecting them, discouraging their LGBTQ identity, was actually harming them—it can be very powerful.
TM: How are your PrEP [pre-exposure prophylaxis] efforts going?
LK: We’ve been really successful getting MSM onto PrEP via hookup apps and nontraditional outreach, like at sex parties. Our outreach workers are sex positive and nonjudgmental and they put their avatars out there on the apps, identifying themselves as CAMBA health educators, and the users initiate contact. Once they do, we urge them to come into the office immediately to be screened not just for PrEP but other needs, like asylum status, housing, employment, food insecurity.
And we follow up with them at one month and three months. We have close relationships with area PrEP providers, particularly SUNY Downstate Medical Center. The biggest problem we encounter is young MSM who have unstable lives but are still HIV negative and hence not eligible for housing through us. There are some other shelter options in NYC for LGBTQ youth, including a special youth shelter at NYC’s Unity Project and also the Ali Forney Center.
Michelle Montgomery: We’ve linked 40 people to PrEP the past year—and probably 120 in the two years we’ve had funding from the CDC via the NYC health department.
Angeles Delgado: But we’re very uncertain about the future of that funding.
TM: How would you all characterize the current HIV situation in Brooklyn, given that NYC has recently announced that it has met its 90-90-90 goals on HIV citywide?
LK: Brooklyn still hasn’t met the 90-90-90 goals. There’s still so much stigma in Brooklyn around LGBTQ identity, for all that the borough is seen as such a cosmopolitan place.
TM: Have you found, as many places have, that immigrant clients fear accessing services because of Trump’s proposal to deny green cards to immigrants who seek public benefits?
LK: Our office is very friendly for undocumented people to come in—we probably speak as much Spanish in the office as English—but certainly clients are totally preoccupied with the threat of ICE [Immigration and Customs Enforcement] raids and arrests. Our mobile prevention services has developed a safety plan for people if they ever get caught by ICE, what to do if ICE comes to your door.
TM: Where do you feel you’ve had the most success in recent years?
LK: I’d definitely say getting MSM connected to PrEP, and also developing our Project ALY. We’ve really seen attitudes and knowledge change over the years.
ME: Our case managers have been particularly successful in our housing programs, connecting people to medical care and treatment adherence, which leads to viral suppression.
TM: Where do you feel most challenged or stuck?
MM: It’s challenging for us to keep young MSM engaged when it comes to HIV prevention because they have other priorities, such as housing.
LK: I would agree. I think the intractable problems of poverty and yawning income inequality in NYC lead to people like MSMs leading more unstable lives.
MM: We have a health home care management program with 1,500 clients that is designed to connect people with chronic health conditions to care, but one of the most common things we hear about is their inability to find safe and affordable housing.
TM: What would you do with a big new stream of unrestricted funding?
ME: Teaching independent living skills is an important program that we’ve had funding for in the past that would be really helpful to extend again to folks in our transitional housing program. We’d also use the money for education and training workshops for older folks, particularly as over 60% of those in our supportive HIV housing are over 50. We would do more education around health issues like cancer.
AD: I was just talking to a girl who is going to have twins. I was getting ready to purchase a double stroller for her and realized I needed to request the cost for approval—and was told to look into other sources of funding. [Meaning that we need more unrestricted funding.]
ME: And I definitely think we would create housing for LGBTQ youth. We would love to have a transitional housing program where people would have some kind of safe place to live while they share the common space.
TM: What do you think it will take to truly end the epidemic in NYC, especially among young MSM of color, where rates remain highest?
AD: In looking at our HIV-positive clients who are not virally suppressed, you have to look at other factors like substance abuse and mental health issues. We need to keep them engaged in services to address those things.
TM: As for prevention, do you think the problem is a lack of information and social marketing, or something deeper?
LK: There’s definitely information fatigue for certain populations. I think it’s a deeper nut to crack—the intractable issues of poverty and high rent. I think no or unstable housing is the root of a lot of health issues.
ME: I was part of a focus group in which someone asked me what our clients were most impacted by. People are under tremendous pressure to pay the rent.
TM: Have you seen a lot of meth use among young MSM of color as a barrier to preventing HIV or those with HIV staying virally suppressed?
LK: We’ve seen not only crystal use among MSM but also increasing rates of opioid use. We haven’t really focused our outreach efforts on capturing people using crystal—that’s something we want to do more of.
TM: Can you share any stories that illustrate the work you do?
LK: In our women’s prevention services, the person who heads it, Rita Cordova-Padron, developed a very close relationship with someone who for many years was undocumented. But it wasn’t until this woman admitted that she had been sex-trafficked across the border that Rita was then able to connect her to our immigration services and get her legal residence here based on that history. But it took her years to let down her defenses and shame around it. She’s now in HIV care and housing, and she’s able to work legally.
TM: Great. Finally, what do you all do for self-care and joy?
AD: I’ve been doing this work for 30 years for CAMBA, and I love what I do. I also enjoy my grandkids, go to the gym, and travel to Spain once a year to see my mother.
LK: I love to travel and go to concerts, listen to music, plays, dance. Slave Play is one of the better plays I’ve seen lately.
MM: I like to do tai chi and go to indie rock concerts. I just saw the Smithereens. I also like to have drinks with my coworkers from time to time.
KM: What makes me happy is listening to these guys talk about the great work they’re doing.
Positive POV: Jona
We spoke to Jona (last name withheld), 52, of Brownsville, Brooklyn, who is a part-time CAMBA peer health educator. She was diagnosed with HIV in 1987.
Jona: HI! This (Dec. 27, 2019) is my last day of breast cancer treatment. I was diagnosed in August 2018 and did treatment for more than a year—chemo, surgery, and radiation. The treatment was hard. The worst side effects were when I couldn’t tie my own shoes from neuropathy [numbness, burning, and tingling] in my fingers. I still have it, but it’s not as bad as it was.
Tim Murphy: Congrats on finishing treatment! That must have been quite a journey. Jona, tell us your life story.
Jona: I was born in North Carolina and when I was 3 moved to Brooklyn, where I’ve lived all my life. I was a dancer when I was little but then I got pregnant with my first daughter when I was 16. Then when the crack epidemic came around, I got addicted. That’s how I got HIV—while having sex with men while addicted. I never shot up drugs, so I know it was from men.
TM: How did you find out you were positive?
Jona: Back then, people would come around in vans trying to get people tested, so one day when I was out looking for more drugs, they said to me that if I took the HIV test, they’d pay me $50—and if I showed up in the same spot in two weeks for the results, they’d pay me another $50. So I wanted the money for my drug habit, so I did it—and they told me I was positive. At that time, I was still using, so I didn’t pay it no mind until I started getting symptoms in the ’90s—colds, flu, all different sorts of things. But I still kept using until my aunt had to put me in a nursing home, I was so sick I couldn’t walk. I went in in 1998 and came out in 1999, and in the meantime I quit the drugs—I’d already contemplated quitting—and started HIV treatment, combo therapy. I had diarrhea at first, but it went away. In three weeks, I felt so good I could walk again.
TM: So then what happened?
Jona: I started going to different programs at agencies like the Center for Community Alternatives and the Osborne Association to learn about HIV, how it works in the body, and how the meds work to fight it. When you know more, you can conquer anything. I got to go to different states for conferences. I started at CAMBA in 2005 as a peer educator. The grant that paid me ended in 2008, but they hired me back in 2013, then in 2016 as a part-time staffer. So now on a daily basis, I teach an intervention called Healthy Relationships, which is about how to disclose your status to family and romantic interests, and another called WILLOW, which is to help women with HIV learn the tools to be assertive and take care of themselves.
I got my high-school GED in 2006. Now I’m thinking about going back to college to become a case manager at an HIV agency. That’s something I’ve always wanted to do.
TM: What’s been the hardest part of living with HIV all these years?
Jona: Probably disclosing to potential love interests. I met a guy recently who was telling me all the [sexual] things he wanted to do to me, and I was like, “I got something to tell you.” And he said, “You wanna tell me you got The Monster [negative slang for HIV], right?” And I asked, “Why would you call something that regular people have The Monster? There’s a name for it—HIV.” We never talked again after that. But thankfully, I have so many friends who care about it.
TM: New York City is getting close to ending its HIV epidemic. What do we need to do to close the gap?
Jona: People think that PEP [post-exposure prophylaxis] and PrEP mean the end. But I think the end will really mean making sure that everyone [living with HIV] stays undetectable so they won’t spread the virus. And that everyone get tested and know their status.
TM: What’s been harder, HIV or cancer?
Jona: I would take HIV any day over cancer treatment. That was the worst experience of my life. With HIV, you take one pill a day, no aches or pains.
TM: What do you do for self-care and joy?
Jona: I like to hang out with my two granddaughters, who are 11 and 6, take them to get their nails done or go to the park or the beach or the movies. I lost custody of my kids [many years ago], but God brought them back to me. And I like to go to the movies with my friends.
TM: You’ve had quite a life so far, Jona. How do you explain it?
Jona: I can’t! I just live my life one day at a time and try to accomplish a goal every day.
TM: What was today’s goal?
Jona: Well, I will be finished with my final cancer treatment in 15 minutes, and I plan to go get my nails done, a pink French manicure, because my girlfriends want to take me out tomorrow. They know that 2019 has been a hard year for me. I don’t know where they’re taking me—it’s a surprise!