Occasionally, while covering a story, you stumble on someone absolutely remarkable in the HIV/AIDS world who you’ve never heard of before. Such was my case with Curtis Smith, 56, the founder and CEO of Families Living with AIDS Care Center (FLACC), an HIV services agency in Hemet, California, about two hours southeast of Los Angeles. Smith founded the agency in 2004, when he, his wife, and his daughter were extremely ill due to AIDS. They’d gone unaware of lifesaving services for too long—and Smith was determined that would never happen again to anyone in need in the Inland Empire region.
Since then, Smith has endured incredible heartache—but has also persevered, growing his agency into a lifeline for local people living with or at risk for HIV. He’s earned both the admiration and support of Gabriel Maldonado, who runs the HIV agency TruEvolution in the same region.
“Curtis Smith is a very special asset to the Inland Empire (Riverside and San Bernardino counties) and a vital partner in our community’s public health response to HIV, COVID-19, and other health issues in the region,” says Maldonado. “He is a bridge builder and a person who manages to not only connect the community with providers but connects providers to one another. His steadfast commitment to his people and speaking truth to power is what makes him not only a trusted colleague, but a dear friend and an example to us all in public health.”
Now not only a father but a grandpa, Smith took time to chat with TheBody about his extraordinary journey of grief, resilience, and rebirth.
Tim Murphy: Hi there, Curtis! Thanks for taking time to tell your story to TheBody. Should we start at the very beginning?
Curtis Smith: Sure. I was born in South Central L.A. My childhood was rough. I was raised by a single mother who was a sex worker, as a means of survival. That life exposed me to a lot of people who were gay and transgender as well as straight. They would come over and visit. We even had a trans woman named Marilyn live with us for a while, whom I loved. She understood that I was a young man struggling with my sexuality. She could see it even though I didn’t see it at the time. My mother didn’t have a clue about me despite having gay and trans friends. But when I was about 10, she caught me dressed up in one of her negligees, dragged me down the stairs, and threw me outside on the porch. That was very traumatic for me, so after that I suppressed that side of me. My mother has since passed away, and I never actually came out to her.
When I was 18, I moved out of my mom’s house and lived with my brother, which is when I started dating men, but undercover. I would not identify as gay because of the shame. At the same time, I was dating women, including a woman named Paulette. She was a wonderful person and we really liked each other. One night we got intimate and out of that came Brittney, my oldest daughter.
But Paulette found out about my being with men, so we decided to live separate lives, even though she was my best friend—and we had a great co-parenting relationship. I didn’t want another man to have legal custody of my children, so we married. But prior to our marrying, with another man, she had another child, Brianah, whom I fell in love with.
Murphy: How does HIV come into the picture?
Smith: By 1987, I’d had enough sex with men to worry I might be at risk, so I got tested. It was positive. I was in shock. Back then, they often didn’t have counseling, they just said, “Here are your results—go to your doctor.” When I told Paulette, she was very concerned and caring.
A few months later, though, Brianah, who was six months old, got really sick. She couldn’t get over a cold. So we took her to Children’s Hospital Los Angeles. They could not break her fever for two weeks. Finally, the doctor found out that she was HIV positive. It was just devastating. Paulette also tested positive. She’d passed HIV to Brianah in the womb. Paulette thought at first that I’d given her HIV, but we hadn’t had sex in five years. Later on, we figured out it was likely Brianah’s father, who’d drowned to death. Someone told Paulette he’d been HIV positive.
Murphy: Wow, so you realize now that all three of you are living with HIV.
Smith: We decided it was time to come together as a family. We were all told we had maybe five years to live. We looked for support from our church, but we didn’t get it. When I told the church counselor I was HIV positive, she moved 10 feet away from her desk. It was pretty bad. We didn’t know of any resources, and we weren’t referred to any.
So we moved out of L.A. to Riverside County, where I figured we could get more for our money on what I was making as an accountant. In retrospect, I wish we’d stayed in L.A., because of the HIV/AIDS resources. But I just decided to live like I didn’t have HIV. But we were going back and forth between home and Children’s Hospital in L.A. practically every single week.
Murphy: That sounds tough. Did any of you go on AZT, the only drug available at the time for HIV?
Smith: We all did, but it made me so sick that I couldn’t stay on it and work. So I just took care of my family. My main focus was on Brianah. She ended up being a paraplegic because the HIV damaged her brain. She couldn’t walk or talk. It was really tough. We were pretty much living in our own bubble. We told some family and friends. Some were supportive, but others would not invite us to their houses. They also didn’t understand confidentiality, so it really got out there. Paulette was verbally attacked, blamed by some family and friends. This is the early ’90s by now.
Murphy: It sounds like a really rough time.
Smith: It was. We got opportunistic infections left and right. One night in 1993, Brianah screamed and woke us up. She was very limp. We knew something was wrong. By the time we got her to the hospital, they told us she was brain dead. She’d suffered so much already, so we decided to let her go at 4 years old.
Meanwhile, Paulette was pregnant again with a child we’d conceived. We were offered to have that child at UCLA—they’d told us about a trial with AZT to see if it would prevent mother-to-child transmission. But they said we’d have to relinquish our private insurance and get on Medi-Cal [California’s Medicaid]. So we didn’t do the trial. I don’t think we were counseled correctly.
Paulette was on AZT while pregnant anyway, but [ed. note: for unclear reasons, as this usually worked], it failed to prevent infection in the baby, who we named Kalayah. She was born in 1994. She had to go on liquid Norvir at 18 months, which was horrendous. She didn’t know she had HIV. Then, around the age of 9 or 10, she asked us, “What is wrong with me?” so we told her. The doctors thought we would lose her by the time she was 12, but she’s 26 today. She’s had many bouts with depression. She was bullied in school, because by this point I was very open and public about our HIV status.
In fact, the church we were involved in at the time, which knew our story, was having a food drive and asked Paulette to make the mac ‘n’ cheese. But when the pastor found out, he made the parishioners call us to tell us to throw it away. Paulette was in the middle of cooking it. Cooking was her heart and soul. So that broke her heart. We had to cut ties with that church. But that didn’t stop my faith.
In addition, my oldest daughter, Brittney, suffered from not knowing why her parents and sister Brianah were often sick. We protected Brittney until she was 15 from knowing that, which then caused her more trauma.
Murphy: This is such a painful story, Curtis. How did all this pain lead to you founding an organization in 2004?
Smith: It was a spiritual epiphany. In addition to gradually getting vitiligo [a condition that causes loss of skin color in patches], I was literally dying from MRSA [a very dangerous staph infection], which had gotten into my bloodstream. I then found out that Paulette and Kalayah had MRSA, too. We were all in the hospital at the same time—me for 13 days, them for seven.
But in the hospital, they had a room where I would go pray: “God, please keep me alive—my family cannot live without me.” I was the sole provider. I blacked out for two hours. When I woke up, my hair had gone completely white. But God had also given me the vision of the Care Center. I wrote it out word-for-word. It was like God talking to me, telling me exactly how to go about it.
I got better. But I realized that I needed purpose. There were other people out there who needed my help.
I named it FLACC from the beginning, even before establishing it as a nonprofit. I created the brochure saying that we offered linkage to food, transportation, housing, and medical care.
Meanwhile, we were living on my Social Security disability, and because of the amount I got, my wife did not qualify for Medi-Cal, and her health fell. She died in 2009. We didn’t know about AIDS service organizations, such as Desert AIDS Project in Palm Springs, or about ADAP [the federal/state program that provides free meds and care to income-eligible people living with HIV].
Murphy: I am so sorry to hear this, Curtis. How did you not know about those services and programs?
Smith: Not one medical provider ever told us about them. We were in a rural area. There were no HIV or LGBTQ ads of any kind anywhere. So that’s why I was so aggressive getting out the word about FLACC once I started it. I joined chambers of commerce, got the media to write articles. I was doing all the services on my own, with no funds—food, transportation, linkage to doctors. I ran it for a decade like that. I’d get donations here and there, and people would donate their time to help out, but that’s it.
Murphy: Did folks in your area come forward for services?
Smith: Yes, they were ecstatic about a resource like this being in the community, and just having someone to identify with. And I needed that, too. Helping someone else was like helping myself, almost like a drug.
Then someone asked, “Have you ever heard of the Inland Empire HIV Planning Council?” So I went to that meeting and realized that this was where the funding was, Ryan White, HOPWA, etc. My eyes were opened. I thought, “I gotta be on this.” I was so pissed to realize that my wife could’ve gotten health care, meds, and dental care through those programs.
Murphy: How was it that both you and your wife went without effective HIV meds for more than a decade after they emerged in 1996?
Smith: In the ’90s, I got in a clinical trial for Crixivan, but it made me sicker. My wife and I had a doctor in Riverside, so we went on ddI and back on AZT. But honestly they made me sick, so I fell out of compliance. We were not on meds in the 2000s like we should have been.
Murphy: How did Paulette’s illness and death affect you?
Smith: It was devastating. I didn’t know what was happening with her. She started having issues with blood clotting, then with trouble breathing. She went on oxygen shortly after that. Then she started having mental episodes, which were diagnosed as schizoaffective. She got better briefly. Then one day in 2009, I came home from work as a security guard, which I was doing while trying to get FLACC going, and she wouldn’t wake up. She had sepsis [when an infection triggers a deadly body-wide reaction]. She ended up dying from a pulmonary embolism the size of a quarter.
At least she lived long enough to see me start FLACC. She was going to work with women living with HIV. I got my nonprofit status in March 2009, and she died in August.
The following few years were devastating, but I didn’t even cry because I had to maintain strength for my kids, especially Kalayah. She was suffering a lot. She had bouts with noncompliance with her meds because some of them were still making her ill.
Murphy: What did the 2010s bring?
Smith: I wasn’t really processing Paulette’s death very well, so I stopped FLACC for a minute. I’d actually stop and start, because people would not stop calling me regardless of what I was going through. I actually tried to take my own life. I was really suffering. I had a breakdown and ended up going to a psychiatric hospital for a seven-day watch.
Murphy: Do you think you ever actually grieved?
Smith: Yeah—finally I allowed myself to cry, to be angry. I gave myself permission to feel the entire grief process. But I was still guilty, angry at myself for not finding more resources for Paulette.
But I continued the FLACC work. I established a relationship with Riverside University Health System, via their HIV division, then we started doing mobile HIV testing in the community. I’d have my table out there with condoms and information about HIV. We’d go to parks in at-risk parts of Hemet. I’d bring the local HOPWA director to events. It was really great. I started a relationship with Walmart where we would be in front of their stores, take donations, and also give out info on HIV prevention and care. We had events every month. Then I started getting funding through Walmart’s community grants program.
We were also very lucky to have as dedicated volunteers for seven years Bienville Haywood and his two teenage sons.
Up until 2018, I was running FLACC out of my car. Then I met the CEO of a local group, Alternatives to Domestic Violence, and she allowed me to rent some space in her office. I started doing case management with clients out of that space, as well as support groups. That included one for transgender people via a partnership with Borrego Health, which does trans care.
Also, the HIV services agency TruEvolution in Riverside collaborated with FLACC on an HIV Testing Outreach Event at our office where TruEvolution provided HIV testing. We’ve had a relationship now for a few years. If there’s something I don’t provide, I send clients to them. Gabe [Maldonado, TruEvolution’s head] is awesome, always giving me a hand up. He wants to see FLACC flourish.
Murphy: That’s great. So, fast-forward to the present.
Smith: Now I’m in line for funding to do HIV testing—I just applied for the [federal] Ending the Epidemic funding that’s available right now. That would be our first government funding in 16 years of existence.
Gabe invited me to meet with some folks from D.C. who visited FLACC. I took them around the community so they could see the disparities here. One example is a family I wish I’d met a year earlier—a Hispanic woman and her 19-year-old daughter who was living with HIV. They hadn’t known about HOPWA or any HIV agencies. They found me through a non-HIV agency where they were looking for resources. The young lady was really suffering—and two weeks later, she died. That broke my heart. Just like my own family once, they hadn’t known of resources in time.
Murphy: What is the HIV situation in Hemet, where you are located? [According to the Census, the community is 45% Hispanic, 40% white, and 8% Black, with 21% of people living in poverty.]
Smith: The numbers right now show an increase in HIV rates, especially in African Americans. We’re the only HIV agency in a region that covers several surrounding cities, including Temecula, Beaumont, and Moreno Valley.
Murphy: What would you say is FLACC’s single greatest accomplishment so far?
Smith: Just being here, available to link people to care. Currently we’re serving about 25 people, but we’ve served over 1,000 since we started in 2004. I still live off my Social Security.
Murphy: Right. And what has it been like during COVID?
Smith: We do Zoom meetings. People still need services, food, housing. I had a homeless couple who we got off the streets into a motel for a couple of weeks. I was able to pull all their identification together to get them linked up for a HOPWA [residential] voucher, which they’re close to getting.
Murphy: Curtis, how is your health today?
Smith: Pretty good. I’m undetectable. Kalayah was ill all through 2020. She wasn’t being compliant on her meds. She got sepsis like her mom. I thought my baby was dying. They had to send her to UCSD in San Diego for two months, where she got on [the HIV med] Trogarzo [which is indicated for patients with heavy treatment resistance]. They told me she was the worst AIDS case they’d seen in a long time. Now she’s home, with a permanent PICC line [through which to get her meds] until things change, and I’ve been caring for her. Her T cells just went from zero to 100. She also recently had her first child, my grandson, and he’s not HIV positive.
But meanwhile, I also found out I had diabetes and I was about to have a stroke. So I’ve been managing that and doing well. I feel a lot better.
Murphy: Have you been able to address your sexual identity in all these passing years since you married Paulette?
Smith: No. It hasn’t been a priority. But I have to think about it now. I live with my oldest daughter and my oldest granddaughter. But I’m at a place where I’m ready for a relationship. And it will be with a man. I’ve put myself aside for 30 years.
Murphy: Curtis, you’ve been through tremendous trauma in your life. How are you doing with that now?
Smith: The diabetes diagnosis was really an eye-opener for me, a signal that I have to start putting my happiness and physical health first. I can’t be there for others if I can’t take care of myself. The symbol of FLACC is a circle of humanity, a symbol of caring about people. One of my clients, Manny Minnie, helped me create it, and it’s really important to me.
Murphy: What do you make of your life at this point?
Smith: When you’re in the throes of something, you just deal with it. I don’t know how I even survived it. I do know my faith has a lot to do with it. But I’ve been in survival mode for so long. I’m tired of that. I wanna really live, to fully work again, to be in a relationship, and to ask myself, “What do I want?” I’m giving myself permission to ask that.
Murphy: Have you ever done therapy?
Smith: I’m looking into that. As African Americans, we have a tendency not to access mental health services. Our attitude is, “Walk it off—figure it out.” But when I had that breakdown, I realized that mental health is important. I think I need to talk about all the trauma. I think I’m stuck in it—especially from childhood.
Murphy: And yet Curtis, you’ve taken your pain and turned it into compassion and service, which is beautiful. Are you aware you’ve done that?
Smith: Yes, because it’s therapy for me. When I’m helping others, I’m not thinking about myself and my pain. Maybe my mother had something to do with it, because I had to be the adult in the room a lot of times. I had to start working when I was 12. I’ve always been in this survival mode—even before HIV. I want to write a book. I don’t know when and how, but I do.