Successes and Challenges Facing HIV Service Providers in LA County
We spoke to Terry Smith, director of HIV prevention services at APLA Health, who was diagnosed with HIV in the early ’90s.
Terry Smith: I’ve been in my role since 2017 and with the organization since 2005. Before that, I worked with runaway homeless youth.
APLA [which stands for AIDS Project Los Angeles] was started in 1983 by four people who were watching the disease decimate our community and felt like they had to do something. So they helped people die with grace and dignity and started a hotline to give out information. Once the protease inhibitors [which revolutionized HIV treatment] arrived in the mid-late ’90s, we started doing support services for people living with HIV, such as dental, food assistance, legal, and mental health.
Then we kept on growing and in 2010 started doing HIV testing. That led us to really see a need for LGBT-focused health care, so we became a federally qualified health center in 2012 and opened up our first site in mainly Black and Latinx Baldwin Hills in South LA, a community really impacted by HIV and STIs. Then we opened up sites in Long Beach, the Olympic area and San Vicente, Mid-City areas between [heavily gay and HIV-positive] West Hollywood and downtown.
Our annual budget is $60 million, about 80% government funding and 20% private from our AIDS Walk and other events. We have about 200 employees at 16 service sites—the clinics I mentioned, then our dental clinic and behavioral health, then our Necessities of Life program including a food pantry with nine locations. Demographically, our staff reflects the demographics of the HIV epidemic in LA.
My prevention staff of 24 is predominantly African American including myself, followed by Latinx, then two Asians. It’s overwhelmingly gay, with two trans women and one nonbinary person. In addition to me, about four or five of my staff are openly HIV positive.
As for clients served: By the end of June 2019, we’d seen more than 10,000 patients this year and done about 1,800 HIV tests and 2,400 STI screenings.
Tim Murphy: Can you talk about your gamut of services?
TS: We do traditional prevention in terms of educating populations who’ve been impacted by HIV—a majority is with gay and bi men of color ages 18 to 29, and as we educate them, we’re trying to get them tested or to have a serious conversation about PrEP [pre-exposure prophylaxis]. We also really promote STI testing. We do linkage to care for folks diagnosed HIV positive or who’ve fallen out of care.
We do all that work either through personal health navigation sessions or group activities where we bring young people together to hang out, with an underlying message that HIV testing is important.
We also have PrEP Express, where we enroll people into PrEP. We have PrEP-AP here in California, which pays for PrEP-related stuff, and we also hook people up to [PrEP drug-maker] Gilead’s patient assistance program and copay cards. We work with people if they’re struggling to be adherent to PrEP. If they choose to go off it, we ask them, “OK, what is your plan to stay HIV negative?”
We’re also building out sexual-health express clinics like San Francisco has with STRUT or like they have at Howard Brown in Chicago or 56 Dean St. in London. It’s to provide HIV and STI screening as quickly and efficiently as possible. We’re going to purchase a machine that can give chlamydia and gonorrhea results in 90 minutes. Syphilis takes two days because we have to send it out to a lab. We’re hoping that because people have such a positive experience at our clinics, they’ll get screened regularly instead of waiting until it hurts to pee. We hope to open by fall 2020 our first sites in Baldwin Hills and also the campus of Charles Drew University in the heart of South LA in the Watts area. My title will then be director of sexual health and HIV services—and I’m sure my black hair will be all gray by then!
TM: How would you sum up the HIV situation in LA?
TS: I just got new stats from our county department of health, and we’re making some progress even though overall the HIV rates are flat. We have a plan called, “LA County HIV/AIDS Strategy for 2020 and Beyond” to get our rates to zero. With young Black and brown gay and bi men and trans women, the numbers are going up, so we have a lot of work to do in those communities. Hence why we’re focused on opening up clinics [in those impacted communities]. I would say that we started seeing the racial transition in new infections from white to Black and brown in 2004-5.
TM: What would you like to brag about?
TS: PrEP. In LA, we were a late adopter, and myself and others at APLA have worked with the county to get us to where PrEP is now really available. I think my particular division has done a good job of getting young men in and getting them tested, creating a safe space for them and helping create future leaders, training them to employ them or so they can move on to other jobs or go back to school in the field. These are people who came in initially because we hosted a movie night but who caught the fire [for the work we do]. I’ve been doing this work for a very long time and I’m hopeful we’ll make major strides in the next five years, but the younger generation really has to carry us across the finish line.
We’ve also done a good job of being responsive to where the epidemic moves, such as in reaching out to Latinx gay men. We wrote a grant, got funding, and now our “Proyecto Impacto” program is up and running.
TM: As someone who’s both lived with HIV and worked in the field for so long, what do you make of our new era of PrEP?
TS: I think it’s amazing—and I’m stunned that PrEP hasn’t made the kind of inroads it needs to. I came out in the midst of the AIDS crisis, and if there’d been then a pill that was 99% effective in making sure you wouldn’t get HIV, I can’t imagine not having taken it. So as people now struggle with “Oh, what about my kidneys?” or “People are gonna think I’m a slut!” I’m like, “What? Do you even know where your kidneys are?” There’s a part of me that doesn’t have a lot of patience or empathy with people struggling with whether PrEP is right for them. You know what to do—just take it. When I talk like this, I feel like an old man! I realize that most people don’t live and breathe this stuff like I do. Or maybe they’re not part of gay networks that are talking about it. So there’s a lack of information.
TM: So would you say low PrEP uptake is your greatest frustration or challenge?
TS: Yes. We’re still trying to figure out how to crack that nut. We’re going to start training community people about PrEP, then pay them a small stipend and challenge them to go into their networks to talk about it and get people in here to talk to someone about it.
Another challenge is HIV-positive people who are not getting or staying in care. For these folks, HIV is just one more challenge in their lives that doesn’t rise to the importance of struggling with homelessness, mental health, substance use, racism—a whole bunch of stuff that impacts them. So we have our MCC, medical care coordination, for high-risk clients. They get a team of people who focus on them—nurse, social worker, mental health work—and tap into their lives and get them other resources.
TM: Going back to PrEP for a minute, what do you say to people who bring up those ads they see on social media seeking people to join a class-action lawsuit against Gilead for alleged harmful PrEP side effects?
TS: We’ve created a fact sheet that says that if you’re having challenges with PrEP, don’t go to a lawyer—go to your doctor. [It also says that only a few people have long-term problems with PrEP, and those who have short-term problems, such as nausea, usually see that clear up shortly after starting PrEP.]
TM: Are you seeing evidence of new HIV infections in young gay and bi men of color linked to crystal meth use?
TS: Yes. Meth was for a long time identified as a white gay drug, and we didn’t think that the Black and brown MSM community would be affected, but we’re seeing it and we know it’s connected with sexual behaviors that put people at higher risk. We have a program called Party Wise, a harm-reduction model where we bring together young men who are actively using who might show up high, or coming down off meth, and we say, “If you’re going to do this, you can drink water, eat ...” We try to meet people where they are.
TM: What seems to help them stop?
TS: People need to do a life change, get out of their surroundings, and get into some serious rehab—and then start their lives over. So much becomes tied to having sex and drugs together, party-n-play. But I find that folks really have to want to stop, and once they do, it’s going to be the battle of a lifetime. You can’t hang out in the same place with the same people. And even drinking and smoking pot may be setting up the stage for you to take it further [and go back to meth].
TM: Are there ample spaces for free or low-cost inpatient rehab in the LA area?
TS: I’ve spoken with my staff from our crystal meth program about this and they said no. Providers will indicate that they have beds available, but when we try to get a user in the bed, the process takes about a week. There’s no “instant access,” which is problematic, as there is a “golden moment” when someone says they are ready—and we need to act in that moment. Any delay due to paperwork or enrollment procedures only serves to keep that person out of care. I would add that I do not feel that there is enough supply to meet the demand.
TM: What would you do with a lot of unrestricted new funding?
TS: I’d expand that network of people to go into communities and talk about prevention. And I’d open a whole chain of sexual health express clinics. We have just two now, but we need to have them throughout LA and to be open almost 24 hours. Almost like Jiffy Lube!
TM: Are you excited that California will soon make pharmacies give a first month’s supply of PrEP without a prescription?
TS: APLA was a cosponsor of that bill. I think any avenue to get people on PrEP is a good one. I just hope that people follow up with their providers after that 30-day supply.
TM: Any stories you want to tell?
TS: I’m thinking of a young man who came in for one of our movie nights, just to hang out, then started volunteering. We could see that there was passion there. So they recommended him to be trained as an HIV counselor—this was years ago—and so he started volunteering here on Saturday, then got back in school. Now he works for us leading a program working with young people around prevention. They named it themselves. It’s called R3VNG, or “Revenge,” which stands for “Rewriting Three Letters in the Voices of the Now Generation.” The three letters being HIV.
TM: Oh, wow. That’s quite a mouthful. Any other stories?
TS: I have one staffer under 25 who has put together a support group of young HIV-positive Black men. [Read the Q&A with him below.] That came out of his own desire.
TM: What do you do for self-care and joy?
TS: Meditation, working out, and travel. I grew up in the church, Southern Baptist, so one of the good things I got out of that was understanding that I could still have an experience of something larger than myself. A spiritual life. I do cardio a few times a week and lift weights while listening to headphones. Donna, Whitney, Diana—any kind of diva wailing to some good dance music. And my husband and I just came back from Palm Springs, but our last big trips were Chicago and Puerto Vallarta.
TM: What has working in the field for so long been like for you, especially living with HIV yourself?
TS: It’s been very rewarding. I see our work out there in the community, I see people getting on PrEP and having conversations about their status, and it’s heartwarming when I think about the early days when there was so much shame and stigma. And this younger generation has the fire of social activism and social justice and are really able to find their voices. And I like to believe I played a part in that. To have a 27-year-old say to me “I’m on PrEP” makes me feel like our work is not in vain.
Positive POV: Ty Gaffney-Smith
We spoke with Ty Gaffney-Smith, 28, of Inglewood in LA County, who is a linkage-to-care specialist for youth programs at APLA Health. He was diagnosed with HIV in 2012.
Ty Gaffney-Smith: I’m originally from Philadelphia, where I went to Temple University but didn’t finish, and moved to LA in 2013. I didn’t like how violent North Philly, my area, had gotten, and I wanted more career opportunities and better weather. One of my goals for 2020 is to finish college out here.
Back in Philly, around the time of my 21st birthday, I was having fever symptoms, wasn’t feeling myself. I’m a childhood lymphoma survivor, so any kind of strange symptoms, I go straight to the ER. While I was there, they gave me a rapid HIV test, which came back negative, but they then gave me the HIV test that takes three days for the results. They called me back, and some nurses I was familiar with from my cancer days broke the news to me that I was HIV positive. I said, “What do we do now? How do we fix this?”
Tim Murphy: What was your emotional reaction?
TGS: I was numb. I wasn’t shocked and didn’t cry.
TM: Had you had a sense you were putting yourself at risk?
TGS: I had a high sense of risk because I hadn’t always been having sex with a condom. I’d just gotten out of a toxic relationship and was newly single and meeting people on the apps, and I knew I should’ve been doing a lot better job of protecting myself. I thought that I was invincible after chemotherapy and that it wouldn’t happen to me. It was my fault.
TM: I hate words like “fault” and “blame” around HIV diagnosis.
TGS: Well, I do use the word “blame” with my clients now, only because when we diagnose someone positive, they’re quick to blame others, and I think we need to start taking responsibility, initiating those conversations about HIV ourselves instead of expecting HIV-positive people to initiate the conversation.
TM: OK, fair enough. So what happened next?
TGS: I immediately started taking [an HIV regimen], which didn’t suit me and made my body groggy. I was still working a full-time job, so I’d take it at night. I didn’t tell anyone about my diagnosis until last year. I was aware what my having cancer had done to my family and I didn’t want to worry them again, especially with me getting ready to move across the country. I told no friends either. I’m a naturally private person. I’ve come up with a way to handle things on my own.
My family knows now. They were very supportive. I grew up with my grandmother, brother, and mother, and I told them all two days before Thanksgiving last year. They were only shocked over how long I’d had it [and kept it to myself].
I had no job my first six months in LA. I moved into a place in Hollywood with a friend for three months before we realized we couldn’t pay the rent, so we had to move. We stayed at the train station for a couple nights, then a couple hotels, then got a place five months later in North Hollywood. I’d looked up the LA LGBT Center before moving out here and got onto Medi-Cal [California’s version of Medicaid] immediately when I got out here, had my first medical appointment two weeks after arriving.
TM: How did you come to APLA Health?
TGS: I’d already had several jobs in the HIV field. I was working at a law firm in LA when I saw APLA’s job opening for their crystal-meth program, Party Wise, so I applied. But I was a little too bubbly. If you’re running a group for guys coming down off meth, you don’t want to be too in their face. So I didn’t get the job. But two weeks later, Terry Smith called me and said, “Hey, I have a good position for you,” which is the position I’m now in.
TM: What do you do in your job?
TGS: I have about 12 clients between the ages of 18 and 29, all men of color newly diagnosed or previously diagnosed with HIV. For them, it helps to see someone like me who looks like them, so I’ll schedule a Lyft to pick them up, then do a quick intake, like, “Are you hesitant to get into care?” or “Tell me why you fell out of care?”
TM: Did you have a hard time adhering to your meds?
TGS: A terrible time. I would take them for two or three months, then stop, then start again. I switched regimens when I got to LA, and now it’s much better.
TM: What are the biggest challenges that come up in your job?
TGS: Everyone’s concerned about people finding out they have HIV because they come here. The first word in APLA is “AIDS.” Or they’re concerned about what I’ll say to them if they see me when they’re out.
TM: What percent of your clients would you say are totally adherent to their meds?
TGS: A good 80% are undetectable. I go to the doctor’s with them with a list of things they want to ask. As for the other 20%, some disappear but then come back. I think they just don’t like coming to terms with having HIV for the rest of their lives. So I’ll say, “You’re only taking one pill a day,” and then they’ll say, “OK, I kind of get it now.”
TM: Do you share your own HIV status with them?
TGS: Most of the time, they bring it out of me. I have clients who come in knowing nothing about HIV and they’re like, “I’m gonna be skinny and sickly and no one’s gonna want me.” Then I say to them, “Look at me. I’m living with it and I’m beautiful!”
TM: When did you start the support group for the positive guys?
TGS: Two months ago. We do every last Thursday of the month. It’s for them to share stories and be in a space where you can talk about having trouble with your meds and find out what remedies for that others have. At the first group, I asked, “How do we use this? Are you HIV’d out? Do you wanna go hiking instead?” But they wanted to talk about HIV. I introduced them to Terry and a few of the other positive guys here so they could see what life looked like after diagnosis. And they loved it.
I also do a Wednesday night group with young men of color who aren’t positive. They have no concern about what would happen to them after an HIV diagnosis—nobody thinks that far ahead. With young guys living day to day, they know they’re at high risk but they don’t acknowledge it can happen to them. So we do a lot of HIV 101. I don’t scold them. Eight of the 12 are on PrEP, but for the four who aren’t, I don’t ask them “Why not?” I don’t feel like it’s my business. I only come in when they ask, “Why should I?” or “How can I?”
TM: If there’s no concern about getting HIV, how do you incentivize them to stay negative?
TGS: I remind that there’s no cure for HIV, so it’s probably always going to be a concern in your life. Sometimes they’ll push back and say, “Well, you can just take one pill a day.” And I say, “Yeah, but wouldn’t you rather not?” One told me he’d rather be HIV positive because he wants the [housing and other] benefits [you can get if you’re positive].
TM: What do you think the current you would say to the pre-diagnosis you?
TGS: “I understand that you are aware [of the risk], so use that awareness to protect yourself.”
TM: Would that have made the difference?
TGS: I think at the time I thought—in the setting where I was growing up, [to have someone say that to me] wasn’t available.
TM: So what do you make of your life so far?
TGS: I’m very satisfied with the life I have. I came to a conclusion that the only thing I want is to be happy, so I do things every day to make sure I’m happy. I’m probably the happiest I’ve ever been now.
TM: What do you do to make yourself happy, for self-care and joy?
TGS: I go to the gym, I travel, and because I am myself an advocate for mental health among young men of color, I see a therapist, a gay Black male therapist in private practice. Those are my safe spaces. Now I’m able to acknowledge some of the things in my past, like having cancer and my HIV diagnosis, and I guess come to terms with them instead of just coping. We often don’t acknowledge where we were with past traumatic events. I give myself a lot of pats on the back now, and I don’t think I would’ve done that without therapy.