Successes and Challenges Facing HIV Service Providers in Suffolk County
We conducted two conversations with staff members from service providers: one serving a mostly older HIV clientele, the other serving LGBTQ youth of color.
Our first conversation was with Kevin Koerner, site and concierge services manager for the Boston Living Center (BLC); and Morrigan Phillips, clinical director at Victory Programs (of which BLC is a part), which offers services for people facing addiction, homelessness, HIV and other chronic health concerns. Koerner was diagnosed with HIV in 1988.
Kevin Koerner: [Boston Living Center is part of Victory Programs], which has 19 different sites around Boston. I was diagnosed with HIV in 1988 and have been a member of BLC since 1999. In the mid-’90s, I went out on disability. The protease drugs came just in time for me because my T cells were getting down near zero. I got a part-time job here in 2000 and have been here ever since.
Morrigan Phillips: I’ve been here 11 years. I did HIV-related work in D.C. for about five years, then moved to Boston to be closer to family. I got a job at BLC doing communications, but while I was here I got my master’s in social work and was able to do my field placement here. Then, like Kevin or anyone who hangs out here long enough, I got promoted.
Tim Murphy: What is the history of BLC and Victory Programs?
KK: The BLC was stand-alone until 2012when, for financial reasons, we merged with Victory Programs. The BLC started as a grassroots event on Monday nights in the ‘80s when people were dying and stuck at home, ostracized. So they’d get together at different people’s homes and share dinner, and that grew to incorporate a donated space at the local YWCA. We became a nonprofit in 1989, then moved into this [current] space on Stanhope Street.
TM: What is the gamut of services you offer?
MP: The BLC has always had a peer-support model, so our frontline staff, from receptionists all the way up to group facilitators and intake staff, are all people living with HIV who often also have a history of homelessness, substance use disorders, incarceration and mental illness. Our staff shares a lot of issues with the clients.
We’re a drop-in day center and our largest services are our meal programs. We still have Monday night dinners with volunteers that act as servers, and we have lunch Tuesday through Friday. The past few years we’ve had a Thursday dinner called BLC Bistro with karaoke, spoken-word poetry or movies. Last year, we added a Wednesday breakfast.
In all, we serve between 80 and 120 meals a day, over 40,000 meals annually. We are the primary source of food and social support for the majority of our membership. We also have art classes, yoga, massage, a computer lab, a theater group, bingo and holiday events, including a brunch during Boston Pride.
We have peer advocates who do a lot of referrals to connection to care, engagement with care and medical adherence. We also have two nonmedical case managers working with people on things affecting their health, like barriers to housing, credit problems, criminal records, court involvement, helping people connect to behavioral health.
TM: Tell us more about Victory Programs.
MP: They have a substance use and recovery program with permanent supportive housing programs, including a farm in Dorchester. One of our programs is for women who are victims of domestic violence. The original program was Victory House on Massachusetts Avenue, a substance abuse treatment program for men started in the ‘70s that ended up serving a lot of HIV-positive people. McBride House is an HIV housing program.
TM: What do your client and staff populations look like?
MP: Of our roughly 1,200 active members, 48 percent are white and 32 percent are black, with the rest “other” or “unknown.” Men make up 81 percent, men who have sex with men are 47 percent, and those over the age of 51 make up 71 percent, with those age 41 to 50 making up 19 percent. About 3 percent are transgender. We have a trans wellness program.
We have about 30 staffers. All but one of the six people running the member services department are living with HIV—one woman, two Spanish speakers, two African Americans. The rest of the staff is majority people of color and people living with HIV. The majority of our budget comes from government funding, but a large portion to pay our rent in this building is through private donations and foundations. We just had [an event called] Celebration of Life to celebrate our 30th anniversary.
TM: How would you describe the HIV situation in the greater Boston area?
MP: In the area, including the city of Lawrence in the northeast, we’ve had three HIV outbreaks related to injection drug use in the past three years—after so many years of the area being one of the only places in the U.S. to see declining infection rates overall.
Prior to that, we’d not had one recorded new infection related to injection drug use in the state. We’ve had state-funded needle exchange since the 1980s. Then in the 1990s, the state invested heavily in our ADAP [AIDS Drug Assistance Program], calling it HDAP, HIV Drug Assistance Program, where you didn’t need an AIDS diagnosis to qualify. It has a very open formulary [list of covered drugs, including many non-HIV-specific drugs] and a very high income eligibility cap [currently $62,450]. Prior to the Affordable Care Act, Massachusetts had already expanded Medicaid access, so that all works in our favor [in terms of HIV control].
I would break the HIV situation down into three buckets. One is newly diagnosed people who identify as injection drug users. Two is people who are aging with HIV and needing long-term care and support services. And three is people who, despite the area having a robust HIV service system and near-universal access to treatment, we can’t get engaged in care because they’re unstably housed and/or have substance use, mental illness and complex PTSD [post-traumatic stress disorder] issues.
TM: What’s going on on the HIV eldercare front?
MP: A big national conference on HIV and aging happens here in Boston. How do we continue to support people as they become eligible for services like Medicare? How do we promote competency with eldercare services so they understand working with HIV-positive people, some of whom have challenges with social isolation, depression and anxiety as they age?
TM: Do you have a lot of clients who are younger MSM of color?
MP: No. We serve an older population. GLASS [which serves LGBTQ youth of color] and BAGLY [The Boston Alliance of Gay, Lesbian, Bisexual and Transgender Youth] have more contact with the younger positive population and do the most consistent ongoing community work.
TM: What are you most proud of in recent years at the BLC?
KK: I’m proud that we have a real community here for people with HIV where we try to make everyone feel comfortable. This is a really homey atmosphere.
MP: I’d say being able to add additional meals and a nutritionist after we started getting data that showed that the majority of our members relied on us as their primary food source.
KK: We had a new trained chef come in a few years ago. We’ve had duck à l’orange. There’s always a full salad bar with proteins. Always a hot soup, a starch and a veggie with every meal. Occasionally we’ll have steak. Once a month, we’ll do global cuisine, like Egyptian or Vietnamese. We also do cooking classes for the clients.
TM: What are the major challenges?
MP: One is clients who say they are too stressed out to take their meds.
But also, anytime a new federal initiative comes out, like this new Trump administration plan to end the epidemic, or when we got the first-ever National HIV/AIDS Strategy under Obama, it creates these pendulum swings in funding priorities. I remember the CDC [U.S. Centers for Disease Control and Prevention] swinging hard toward condoms; then PrEP [pre-exposure prophylaxis] came out, and that limits our ability to be truly responsive to what the community is saying because you have to use these new buckets of money in very specific ways. Like with the Obama medical model: We’re the place clients go when they’re not going to their doctors. They’re telling us about how lonely they feel.
TM: Did you lose money during the Obama years?
KK: The state lost quite a bit of money, which trickled down to agencies like us. We were penalized for doing well and more money was pushed to the South.
MP: Whereas really the South’s money needed to level up to where we were, rather than having the money taken away from us. I think we ended up with a 40-percent reduction in CDC funding. Then we got some back because we stopped doing as well.
Now we’re on the Trump list of high-burden localities, presumably because our HIV prevalence [total numbers of those living with HIV, not just new diagnoses] is high, because we keep people alive.
TM: Kevin, what has your personal journey with HIV been like?
KK: Like I said earlier, I feel very fortunate that the protease inhibitors came around in time for me. I was able to get on a compassionate-use study for Crixivan [indinavir, one of the first protease inhibitors] before it was FDA [U.S. Food and Drug Administration] approved. But I’m sad for friends who passed away and couldn’t hold on.
I get a real sense of community from having worked here the past 20 years. A lot of people know my name, and for me, a white boy from suburbia, it’s been a whole new world and I’ve met a lot of different people from all walks of life.
TM: Can either of you tell us some stories that illustrate your work?
KK: We’ve had several members pass away suddenly in recent years from opioid abuse. We just lost one last week.
MP: We’ve developed relationships with people that span years. I’ve seen clients cycle through a lot of different places in their life. We have a member, a longtime heroin user who went through different periods of recovery. But this time around, he really threw himself into it and went back to school at a community college. Then he was diagnosed with liver cancer and a lot of us were nervous that that would trigger a relapse, but he didn’t. He stayed in school while doing his cancer treatment, reconnected with his family, got a job at the school he was going to.
I’m so lucky to be able to see all this come true for him after knowing him for 11 years. If I worked in a short-term residency program, I’d only meet him in crisis; but instead I’ve seen him go through all of this and I know the whole person.
We also spoke with two staff members at GLASS, which operates drop-in centers for LGBTQ youth of color: Anthony Del Real, prevention services manager; and Francisco Rivera, lab coordinator and health navigator. Rivera was diagnosed with HIV in 2013.
Anthony Del Real: I’ve been in my current role for three months but with GLASS for three and a half years. GLASS has two teams, behavioral health and prevention, and I oversee prevention. We are funded to provide HIV prevention-based services to LGBTQ youth of color ages 13 to 25. We provide HIV testing plus education and referrals around HIV and STIs [sexually transmitted infections]. My team oversees different aspects of our prevention sites. For primary care, we’ll refer to places like [LGBTQ-serving] Fenway Health, Mass General Hospital, Beth Israel—anywhere that fits their needs.
TM: Can you describe your clientele?
Francisco Rivera: The majority of our youth identify as youth of color, primarily black and Latinx.
ADR: About 85 percent are cisgender and 15 percent are transgender or nonbinary, with that rate increasing. We’re located on the Jamaica Plain/Roxbury [public transportation] line, with most of our youth coming from Jamaica Plain, Roxbury and Dorchester, with a sprinkling from Somerville and Malden. We started as a drop-in space on Massachusetts Avenue in 1995.
TM: How would you describe the HIV situation in Boston currently?
FR: I think the answer depends on the demographic you’re working with. If you’re talking about gay MSM, there’s been a lot of progress due to universal health care [in Massachusetts] and campaigns around PrEP and U=U [undetectable equals untransmittable]. More and more young people are educated on these subjects than a few years ago.
But if you shift to IDUs [injection drug users], there’s still a lot of stigma for them and not a lot of PrEP campaigning toward them. Also, Boston is a bubble. If you go out toward central and western Massachusetts, you see a huge shift in education and resources. I’m from western Massachusetts, and there’s no such conversations or billboards about PrEP or U=U, or many LGBTQ-friendly places for your health care. I didn’t even know PrEP existed until I was diagnosed with HIV. When I was working at a little nonprofit called HIV/AIDS Project in Springfield, Mass., I’d consistently get new referrals about youth becoming positive.
TM: Now that you’re in Boston, how are efforts there in terms of getting young MSM of color to consider, or to go on, PrEP?
FR: For white MSM, there’s less stigma [around being MSM] than for youth of color, especially low-income youth of color. So PrEP might be heavily stigmatized, people asking, “Why are you taking PrEP?” So if I’m a black man who is perhaps on the DL [down-low], accessing PrEP can be worrisome because I don’t want anyone to know I’m having sex with men.
Either that or people don’t know there’s coverage. Often they’ll say, “Oh my God, I didn’t know I could access this for free.”
TM: Have there been effective poster campaigns in key areas in Boston?
FR: There have been “Getting to Zero [New Infections]” and U=U campaigns. We partnered with Mass General to do a PrEP campaign for a month on the [subway’s] Orange line, and that sparked interest in PrEP among people of color. All they had to do was text “PREP” to me and I’d say, “Hey, thanks for responding.”
TM: How have efforts been as far as getting people to stay on PrEP?
FR: Pretty good. We have a nurse practitioner come here every Wednesday to provide same-day PrEP prescriptions and follow-up. You can get your labs done here.
TM: Do you guys do any fun stuff to engage young people?
FR: Yes, we regularly do monthly community events. There are a few ballroom houses [part of the culture of LGBTQ youth of color, which includes events known as balls] in Boston that some of our staff are in, so every month we have a Kiki Ball. Last year, we did a ball centered around PrEP. And Mondays and Tuesdays we have a voguing hour where you can come in and learn how to vogue.
TM: What would you like to brag about?
FR: GLASS allows me to be open and creative. I started a monthly support group for HIV-positive youth. In November, [we had] a three-day retreat for our HIV-positive youth to come together and talk about their experiences.
TM: Francisco, what has your own HIV journey been like?
FR: I was 23 when I was diagnosed. At that time, I didn’t know that what I was doing was putting me at risk for HIV because no one had ever had that gay sex talk with me. I didn’t know that anal sex between men could put me at risk. In western Massachusetts, I was seriously in the closet and was not going to ask my mom to take me to the store to buy condoms. And there were no ads that said, “Hey, if you’re bottoming without a condom with other men ...”
So when I got the diagnosis, it was pretty shocking. My regular primary care doctor told me and left the room and I had to sit there by myself. Nobody ever counseled me. Eventually a nurse said that they would refer me to an infectious disease specialist, a woman who had a little private practice in Springfield.
TM: How did you end up dealing with your diagnosis in the ensuing years?
FR: I guess I really didn’t. I had to get over the initial shock really quickly. I told my mom. I had no choice. She demanded to know what was going on with me. She was helpful but I still had no outside support. I hid my status for a very long time on Grindr, and when I did disclose there, I was outed by one of my sex partners. People [were] sending me messages saying, “Go die of AIDS; you’re horrible and shouldn’t even be on here.” I had to power through it.
I moved to Boston in 2018. I’d met another positive person online and we helped each other move here, where I noticed a huge shift in people’s responses to my being positive. They’d say, “I know what U=U means; no worries.” That empowered my work here at GLASS. I wanted to make sure that no youth felt as alone as I had.
TM: Do you guys have any stories to tell that illustrate your work?
FR: I recently met these young people from Mexico—two young gay men. One is HIV positive and the other negative, and before they came to our door, they would always have to fly back to Mexico to get their HIV meds and access PrEP. They didn’t know it was all available here free for undocumented people. But through our PrEP poster campaign, the negative partner hit us up, and we got him on PrEP, then got his partner on insurance and set up with primary care. And all because one of them looked up on the Orange line and saw our PrEP ads.
TM: Boston and Massachusetts are often pointed to as the gold standard in HIV services and health care. Are there gaps in the system?
FR: People have access to health care in Boston, yes; but whether they know how to access it is the challenge. Take the two Mexican kids I just mentioned.
TM: So you’re saying that nobody is going out of their way to tell undocumented people that they have access?
FR: A lot of young immigrant people, and their parents, fear that if they initiate coverage, then it’s going to mess up their immigration status down the line. They don’t know that MassHealth is an isolated entity. That Mexican couple feared that if they went too far with coverage, it would trigger a response from ICE [U.S. Immigration and Customs Enforcement] and they’d be deported.
TM: Boston has a reputation as being both very liberal and also historically racist. Why do you think that is?
FR: I think Boston has some problematic issues around race. There are still tensions around people of color accessing services. If everyone here were on the same playing field, then GLASS wouldn’t need to exist. I think our youth see racism in how they interact with providers, officials, police, and case workers.
ADR: There’s not the same level of education here within the public schools, so that plays into the information people get about HIV. Young girls say that they never saw a condom or a dental dam until they came to GLASS. A few years ago, the public schools gave back thousands of donated condoms because some parents complained that the packaging was too suggestive. It ties back to the Puritanism [in the region].