Successes and Challenges Facing HIV Service Providers in Riverside County
We spoke with Gabriel Maldonado, 30, CEO of TruEvolution, an HIV/AIDS agency focused on LGBTQ people of color in Riverside, California. He was diagnosed with HIV in 2013.
Tim Murphy: Gabriel, you're young to be the CEO of a services agency! Tell us about how you got to this point.
Gabriel Maldonado: I was born part Latinx and part African American in nearby Fontana, California, and grew up in South LA. As a teen in high school, I was very involved with the Teen Community Police Advisory Board, whose point was to bring together minority populations and do anti-violence and anti-gang work. Then in undergrad at UC-Riverside, I worked for San Diego Pride as their festival manager, doing trainings with local community members. Riverside and San Bernardino counties make up the Inland Empire, which traditionally has been a hotbed for the KKK in California and has been very conservative and white. When I would get off the freeway from LA in this area back in 2007, the first thing I would see was a "God Hates Faggots" sign.
TM: Wow, OK. So how did TruEvolution come to be?
GM: We started as a platform for minority LGBT youth to develop leadership skills and peer-to-peer networking. When we started in 2008, the city of Riverside actually didn't even have "LGBT" written anywhere in the city's nondiscrimination policy, and the city charter still referred to Asians as "Orientals." So we did a lot of leadership development inside high schools, helping LGBT students get access to financial aid, scholarships, career readiness. All of us working for the group at the beginning were UC-Riverside students, working in school districts in majority-POC [people of color] areas including the city of Riverside, Moreno Valley, Hemet, San Jacinto, and Temecula.
During the early part of starting TruEvolution, I was still very much connected to LA, getting immersed in HIV work, and I started to see that a lot of HIV disparities were impacting gay men and trans women of color. I worked with up to 500 black gay men over the course of four years, facilitating groups, and during that time, kids would come in high off weed and all kinds of stuff, sleeping in their cars, turning tricks to buy food. They'd introduce me to their trans sisters. But then I'd go back to Riverside and couldn't find this population. Once we started doing more HIV work in Riverside, we found that indeed there was this population, but they didn't know where to go. There were informal social networks in different towns that we found through social media and word of mouth, often through influencers like David St. Pierre, who owns The Menagerie, the only gay bar in Riverside, or the Rev. Benita Ramsey, who runs the Rainbow Pride Youth Alliance.
The county was at first not supportive, because we were proposing to work with youth in schools on HIV issues, in a conservative district that would go on to vote for Trump. But eventually we got our first funding from the county in 2010 to open an office to organize a training for health providers on how to better serve vulnerable populations, communities of color, sex workers. There is no gayborhood in this area, just people in their homes in isolated suburban neighborhoods where towns are often 45 minutes apart by car. There were no billboards telling people where to go for services -- no workshops, conferences, or mobile testing sites. So we started off just doing outreach and referring and linking people to service and care providers including AIDS Healthcare Foundation [AHF], Foothill AIDS Project, and Borrego Health.
Then in 2012, we got a Ryan White [CARE Act] contract and got a bigger space and got into direct services. We received more county money and started doing HIV testing, supported by AHF. Then we added case management, because we realized that after we tested people and linked them to care, they would come back to us and say, "I couldn't get into care because my insurance lapsed," or "because I'm undocumented," or "I don't speak English well and I don't understand these forms." We also did a lot of events to reach people -- town halls, creative workshops -- and to build on those influencer networks.
That's why we're called TruEvolution, because we really evolved.
TM: Wow, quite an evolution. So tell us about the agency today.
GM: Our annual budget is now $1.45 million, up from $900,000 last year. We have 13 staff and in 30 days, we'll have about 20, because we're getting ready to post eight new jobs. One hundred percent of our staff is people of color; half identify as Latinx and 40% as African-American, all but two or three are LGBT, and about 20% are gender nonbinary. I'm the only one I'm comfortable right now saying is living openly with HIV. We have about 250 regular clients, but we touch about 5,000 people in terms of our community outreach efforts. We also have a very successful internship program, about 20 to 30 interns a year from UC-Riverside.
We have three main pillars of service. One is HIV care and prevention, which contains our testing, linkage to care and treatment, case management, and our new PrEP clinic, which we started this year with $250,000 annually from Riverside Community Heath Foundation. We get people onto PrEP the same day we first see them. We refer people to outside primary care. I'm a huge skeptic of POC-based CBOs [community based orgs] converting to primary care [as many HIV-focused CBOs are doing nationwide], because that forces us to prioritize operations and services and moves us away from our cultural commitment. There's only so much money and resources, so if I have to allocate all that to Ryan White contracts, hitting my numbers and billing, I'm not investing in cultural events.
The second pillar is our mental health clinic, overseen by Dr. Nathaniel Currie, who is a contributor to The Body. And the third pillar is our emergency supportive housing program. It's a hotel voucher program in which we can house people for up to 21 days if they are on the street with nowhere to go. For more permanent housing, we refer people to Foothill AIDS Project and Desert AIDS Project. Because our program is funded by HOPWA, you have to be HIV positive to get the voucher -- although HOPWA did give us money to hire a navigator to help HIV-negative clients with housing, which I want to use as a tool of prevention.
We also have support groups that happen all week in both Spanish and English: one for LGBT folks, a new trans support group, a people living with HIV support group, and, starting in January, LGBT recovery groups. We have an open, drop-in, community center–style office. The whole place is couches and hang-out spaces, with coffee and food around the clock. My own mother, Miss Marguerite, is our chief of staff. She left her job at the post office and came to work here for free after I became HIV positive, because she felt I needed someone to worry about me while I was worrying about other people. All the clients call her Mom, and she knows them all by name and has a cake in the office on their birthdays.
TM: Your mom sounds fierce. Anything else?
GM: We're also a public policy organization. My passion is coordinating health departments and minority CBOs in underserved areas. We're trying to do a series of listening sessions for four underserved California counties in the federal Ending the Epidemic [EtE] plan: Riverside, San Bernardino, Alameda, and Sacramento. We're concerned that we can't meet the EtE goals the way that a wealthier county like San Francisco can.
We also have a really dope annual youth conference called Youth United that's hosted by a different high school every year.
TM: It's interesting, because recent data on HIV in Riverside County shows the epidemic heavily concentrated among white and Latinx people in the much richer Palm Springs area on the other side of the county, while rates among lower-income POCs where you are, are comparatively low. What else would you pull out of that data to tell the story?
GM: One thing is that African Americans in the county in our area are 50% more likely to have progressed to AIDS, or what some people are calling "stage 4 HIV," by the time of their HIV diagnosis or even long after they've been diagnosed and entered care. This speaks to the level of people in the black community in our area who are not getting tested, and that even if people do find out they are positive, there are still barriers to getting into and staying in care and on treatment. Also, our HIV population here is diverse -- including undocumented immigrants who are held at a detention facility in San Bernardino, migrant farm workers, transgender sex workers -- and things like transportation, housing, and food insecurity play a larger role here than they do in [more affluent] East Riverside County.
TM: What are you most proud of?
GM: The workforce that I've built. Many weren't experienced in HIV before they came in as interns and volunteers, and we grew into this together. To see them become the new public health practitioners in the region is one of my proudest achievements, knowing that if I were to leave, there's a whole team who could take over for me. I'm also really proud of our mental health clinic, because without mental health you can't achieve anything in the world. If someone is in a state of trauma, paralyzed in their history, and they don't know how to understand, celebrate, or love themselves, then nothing of meaning can be accomplished. Everything begins with the stabilization of the mind and the soul.
TM: What's been most challenging for you?
GM: Keeping up with the requirements of being a direct service provider. I'm working from home today and when I get off this call, I'll spend the next six hours balancing the budget. That's how I use my time now. Also finding staff is difficult because we're minority-led, so you have to be a part of the population that we serve but also really good at your job. And this low-income area is not the most attractive for a public-health graduate.
TM: What's most challenging about the population you serve?
GM: The creeping feeling of fatalism many of them struggle with when you are in an isolated area with no resources, no representation, no reflections of your worthiness or that life can get any better. We're a 27,000-square-mile county, which makes this work challenging because we have to be continuously re-engaging with our clients, giving them the hope and optimism they need to fill out more bullshit paperwork, when the world around them is telling them they're not worthy.
TM: You and others have mentioned that Desert AIDS Project in Palm Springs has such a wealthy donor base, such luxurious resources like a yoga studio, and can raise a few million at a gala in one night. Do you wish they would share more of those revenues with you?
GM: Well, David [Brinkman, CEO of Desert AIDS Project] is a mentor and a friend. They have such a large HIV prevalence because Palm Springs is a great place for often wealthy, white gay men to retire to after San Francisco or West Hollywood, because the services are great. We've been waiting a long time for bigger [HIV/AIDS agencies and health centers] to support CBOs. But maybe we need to have that conversation with them. AIDS Healthcare Foundation is the only major HIV organization I know that has taken a large share of their proceeds and redistributed them in various ways to CBOs.
TM: So you started your agency in 2008 but were diagnosed with HIV in 2013. What was that like?
GM: I was 24 at the time, still young and naive. It was a sexual assault in my apartment, and I wish I had known about post-exposure prophylaxis (PEP, taking HIV meds for a month after possible exposure to prevent infection) or where to get it. The diagnosis has been one of the most traumatizing experiences of my life, but also one of the greatest blessings, particularly for the work I do, because it opens up doors. Everyone is interested in what people living with HIV have to say. Being a person with HIV and a minority is like walking into a room with a shield and a sword. Every time I open with, "As an Afro-Latino gay man living with HIV...," all eyes are on me. That's a tool. For our first three years, we were denied county funding, but when I told them that I was living with HIV, then all of a sudden, we got our first funding.
TM: Tell us some stories about daily life at TruEvolution.
GM: Every year, we have a gala and give our True Hero award to one of our clients. So last year, we gave it to Michelle O'Brien, a transgender Vietnam veteran and one of the longest participants in our support groups. We told her she could invite anyone from the support group to come for free, and the entire group of 30 showed up just to support her. When Michelle got up to get her roses, all the clients stood up and cheered. I love seeing that camaraderie and collegiality take shape within our support groups.
Another story is about a young man who came to us for the first time after having sex in which the condom broke. We tested him and he tested negative, so we tried to get him on PrEP, but when he went to the pharmacy with his prescription, the pharmacist said to him, "Maybe you should work on thinking about your lifestyle instead." Well, that client has been under my mom's wing for the past two and a half years. My mom becomes everyone's de facto case manager. Everyone stops in to see Miss Marguerite first before their other appointments.
Positive POV: Christopher Altala
Christopher Altala, 27, of Ontario, California (in San Bernardino County), is a customer service representative for a medical supply company and a TruEvolution client. He was diagnosed with HIV in 2016.
Christopher Altala: I grew up in Rialto, California, then moved to San Bernardino when I was 17 and got my associates degree from San Bernardino Valley College. I knew I was gay in middle school. Other students were asking me if I was gay or straight, so I did some research, talking to other people, and realized I was gay. I always knew I was different, checking out other men. My family is Mexican-American, very Catholic. When I came out to them, I never really said, "I'm gay," but I told my mom, who was in shock. I said, "I have a boyfriend," and she got emotional and let me know that she knew this whole time and was waiting for me to tell her. Everyone in my family took it well.
As for HIV, I would always get tested every two to three months, a routine. But the day I tested positive, it took a lot longer for them to come in and tell me, and when they did, I cried for a long time in the office and hugged the doctor. I was surprised, but I'd not been having as much safe sex as I should have been. If I'm being completely real, I just didn't think it was going to happen to me. I thought of friends who were not as safe as I was who still had not gotten it. I'd not even heard of PrEP at the time of my diagnosis [even though it had been FDA-approved four years prior]. I was getting tested regularly at Planned Parenthood in San Bernardino, and PrEP was never brought up there. I'd definitely have considered going on it.
So after the diagnosis, I was in shock. I had a boyfriend at the time; we'd been together for only two weeks and I had to tell him that night. He was very supportive, going to my best friends to tell them, but after a few months, he broke up with me because I was HIV positive. He said he just couldn't do it. I was just learning about PrEP with him at that time, and he wanted to consider it, but he wasn't confident that it would work.
After Planned Parenthood, I went to Kaiser for my primary care and saw a doctor. My boyfriend even came to my appointments, but PrEP was still never brought up. So 2016 was a very rough year, getting diagnosed then getting dumped. I told some of my close friends about my diagnosis, and I told my aunts and my mom. They were shocked but supportive and just wanted to make sure I was OK. They didn't know much about HIV except that when they were younger, it was a death sentence -- and that was still stuck in their head. So I had to let them know I'd be OK.
I also got another boyfriend, but I wanted to speak to someone who would understand my situation, and I thought about Gabriel Maldonado. I'd heard about him because I know Mark Takano, a congressman here in Riverside. I was his assistant in high school when he was a teacher. So I reached out and asked him if he knew anyone doing LGBTQ work in the community, and he gave me Gabriel's contract. After the Orlando shooting [at the Pulse LGBT nightclub] of June 2016, Gabriel led the vigil here in Riverside. A lightbulb went off in my head that I could get help and understanding, so I reached out to him in early 2017 and Gabriel asked me to come into the office. So I did. I spoke with one of the peer counselors, another man of color who was also HIV positive, and started to feel good that someone understood. It felt comforting, like home.
So from there, I began going to the emotional support group at TruEvolution. Later on, I started going to the private therapy sessions there with Valerie Spencer, a transgender woman, and it made a world of difference. I felt like I could speak to someone who understood. It was one thing getting advice and support form family and friends, but there's only so much they can help you with versus someone who's been through similar things. Valerie just let me talk about [my HIV status] and made me feel like it wasn't the end of the world, that I was healthy and still Christopher. She made me feel at home and not so stuck in the stigma of having HIV.
I wanted to give back, so when I turned 26 and left my parents' health insurance, I found AIDS Healthcare Foundation and started going there for my primary care while still going to TruEvolution for behavioral health. At AHF, Erica Washington, a case manager who is now a group facilitator at TruEvolution, got me learning about HIV policy and involved in advocacy work. I went to a conference for Building Leaders of Color (BLOC) under NMAC in Austin, Texas. I learned so much, such as the struggles that people living with HIV have had to go through in the past, and the current struggles that some people in other states live with. It made me feel extremely blessed to live in California, but also made me realize that we as a community can spread the wealth to make sure everyone's under care the way I am. I met so many great people. Later on, we went to Cincinnati, Ohio, for a conference on quality improvement in HIV care.
Earlier this year, Gabriel asked me to be on the TruEvolution board of directors to have a client voice on the board. It's been interesting. Most of it goes over my head, there's so much technical information. I'm now interested in going into this work professionally. Right now, I'm just building my resume to find what I want to do.
TM: You've been on quite a journey. How's it going with relationships and intimacy?
CA: I've been in a relationship since March. It's had its ups and downs, but it's going well. My partner is negative and on PrEP. I'm undetectable [hence can't transmit the virus] but it's nice to have that extra layer of comfort. When I was without medication between Kaiser and AHF, he helped me find meds. He came to support me at a training with Erica at TruEvolution about three weeks ago that we brought back from Cincinnati, which made me feel really good.
TM: What do you make of the HIV situation in your area?
CA: From what I've seen this year, I think we're doing a great job. There's outreach, housing, all these things that are accessible for people living with HIV, and I compare that to when I was in Cincinnati and listening to people's stories about having to drive three hours to get their meds or see their doctors.
As for other gay men of color my age, I go to the emotional support groups at TruEvolution weekly. There's a few white men and trans women in the group, and there's a people-living-with-HIV-only group every other week that's mostly men of color. It's led by Dr. Nathaniel Currie. We usually agree on a topic, so sometimes we'll talk about relationships and give each other advice. Maybe somebody is with someone HIV negative, like I am, so we talk about dealing with that, or about HIV status disclosure, or what medications we're on.
TM: What are your personal goals?
CA: I'm on the fence between pursuing a career in culinary arts or mental health. So my goal now is to keep doing what I'm doing with TruEvolution and AHF outside of work, and eventually getting involved professionally. I definitely want to go back for more schooling. I applied to the Culinary Institute of America and am waiting to hear. I actually took two years of culinary arts in high school. My favorite food is Asian curries and sushi. Good sushi is all about making the rice right -- not too sticky and not too dry.
TM: What do you think is driving HIV rates among gay and bi men of color in your area?
CA: I've asked that question to other people, and what makes sense to me is that sex isn't talked about in black and Hispanic cultures. It's taboo. It needs to be talked about more; the questions that are asked by children or even teens or adults need to be answered. From what I'm seeing TruEvolution do, I see it being talked about more in our community.
TM: What would you say to someone newly diagnosed with HIV?
CA: This actually happened. He was an 18 year old who'd just found out he was HIV positive, and he came to the group with his mom, who seemed frightened. I said to him, "I, too, am HIV positive, and I know how you feel and I was scared, but everything will be OK, and you can call me anytime." It brought me back to how I felt when I was diagnosed and it felt good to say that to him. His mom seemed grateful. I wish someone had done that for me right after my diagnosis. The first person I spoke to was Gabriel, even if it took me time, but when I finally talked to him, it felt good to relate to somebody.