In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called Eyes on the End. This series will include a snapshot of the HIV epidemic in each of the 48 counties, seven states, and two cities targeted within the plan. These profiles aren’t meant to be the definitive story of the epidemic in each locale, but rather — through sharing some basic statistics and interviews with a few key stakeholders — to provide some context for what’s occurring there, and what it will take to end the epidemic in that area.
The Big Picture: HIV in Riverside County (Palm Springs), California
HIV cases here are overwhelmingly concentrated in Palm Springs, a gay desert retirement mecca with excellent HIV services that is anticipating a high need for LGBT eldercare in coming years. For this series, we also interviewed people in the city of Riverside, which has an epidemic that impacts more black and Latinx people.
Need-to-Know Stats About HIV in Riverside County
Of 2.4 million people living in Riverside County, 9,515 are living with HIV — .4% of the total population. Whites make up 63% of cases (versus 38% of the population); Latinx 25% percent (versus 47% percent of the popuation), Asians 1.7% percent (versus 6.3% of the population), and blacks 8.7% (versus 6% of the population), concentrated in West Riverside County.
Most HIV cases are in men (92%) who have sex with men (75% in recent years) and in those ages 50 to 70. Cases are concentrated in East Riverside County, home of Palm Springs, a gay retirement mecca that has 20 times the number of people living with HIV/AIDS as the state overall.
In 2017, 73% of those living with HIV were virally suppressed, versus 63% for California overall. Among newly diagnosed persons, 86% were linked to care within three months of diagnosis.
From 2016 to 2018, half of all early-stage syphilis diagnoses were in people living with HIV.
Of the 64 reported transgender people living with HIV in the county, 61% are nonwhite.
- Between 2003 and 2018, there was an overall decline in new HIV cases among whites and a rise among Latinx people and African Americans.
Successes and Challenges Facing HIV Service Providers in Riverside County
We talked with David Brinkman, the CEO of Desert AIDS Project (DAP). He is HIV negative.
David Brinkman: I became the CEO here about 14 years ago. Before that, I was in LA running a charity for homeless kids — but my first HIV-related job was 25 years ago, for the Cascade AIDS Project in Portland, Oregon. I was a kid working in prevention programs, passing out condoms, lube, and instructions.
Desert AIDS Project is actually the largest health care and humanitarian organization in this region. We were founded 35 year ago by a group of volunteers, people trying to keep their partners alive, moms trying to keep their sons alive — and a group of people went to the top of one of the mountains for the weekend — those who are still around remember this very distinctly — and when they came back down, they knew they needed to form a community to respond to people dying. So we were called the Community Counseling Center, because the tourist industry here, which was run primarily by gay men, did not want to acknowledge that there was an HIV epidemic in this resort town.
Like many HIV/AIDS agencies, we started in the warehouse district, in a building that we could afford. What’s unique about our history is that this is a retirement community and there’s a lot of affluent, educated people here, and DAP has always had an enormous group of volunteers. Today we have 600.
The other unique thing is that one of our board members, Steve Chase, who died in 1994 at 52, was a very well-known gay interior designer who did all the homes for the Krocs, the family that founded McDonald’s. In the early ’90s, when Steve was wasting and had KS, he was still very much out there, inspiring the public, and when he died, Joan Kroc, Ray Kroc’s widow, bought us a 40,000-square-foot health care facility — it was a former cancer care center — on 11 acres that we own today. So that changed everything for us. We’re a town of 40,000 people, and when I give people tours of our campus, which includes housing, medical clinics, dental and acupuncture clinics, a gym, a farmer’s market, and a food depot, people will ask, “How have you created this utopia?” I say it has to do with the courage of Steve and the generosity of the Krocs, who were otherwise very conservative.
Tim Murphy: That’s a great origin story — an HIV agency funded by a burger fortune! So what are your gamut of services?
DB: We have a $50 million annual budget, 235 staffers, 600 volunteers, and we serve 7,000 people. Of our 37 leadership positions, 11 are held by HIV-negative white men, three by HIV-positive white men, 14 by women, 10 by Latinx people, three by black people, and two by Asian people. Of our 235 staffers, 132 are male, 103 female, and 123 are people of color.
When we were founded, there were no HIV meds on the market, not even an HIV test, so our response was holistic, including acupuncture, nutrition, chiropractic. All those components are still a part of our organization today. We have a partnership with Deepak Chopra to provide Ayurvedic medicine from India, reiki healing, massage, yoga. Then when the Ryan White CARE Act was passed in 1990, we were able to hire people to bring in a more Western approach. So now we have two medical clinics. Finding an HIV doctor in the U.S. is hard — it’s competitive to hire and keep them. So we recruit young doctors through the national program that forgives [med school] loans if doctors serve in federally qualified health centers (FQHCs).
We started a program called Get Tested Coachella Valley. The CDC said to us, “You don’t have a legitimate STD clinic, and we know your STD rates are over the top, so why don’t you open one?” That was probably seven years ago. We had to talk about the prospect of caring for people who did not have HIV. We did it through private funding. We learned that, for those without insurance, we had to keep our rates really low so that young community college students could come.
We also knew that we needed a center of excellence for PrEP [pre-exposure prophylaxis] and PEP [post-exposure prophylaxis], because we heard that area E.R. doctors were saying, “I don’t know what you’re talking about with this PrEP thing, maybe you should go to the AIDS clinic.” That is funded through [Truvada maker] Gilead, private funds, and revenue we receive via the 340B Medicaid program.
But once you start doing sexual wellness, you realize you’re caring for a population that doesn’t have primary care or isn’t comfortable with care that’s not LGBT-competent. It became apparent that our clientele wanted to get their primary care at the clinic. So today we serve primary care to both those living with HIV, 51%, and those not.
Anal cancer, which is vastly more prevalent in HIV-positive gay and bi men than in the general population, is one of our specialties. We have two clinicians whose practice is based on preventing HPV [the common sexually transmitted virus that causes cervical and anal precancer and cancer]. We use laser technology, which is less invasive than cutting, to remove dysplasia [precancerous lesions]. It also does less damage to the immune system. In 20 minutes, patients are off the procedure table with only short-term soreness. It also protects sex lives. Most places will be more severe in treating anal precancer [because they’re not sensitive to gay sex lives].
TM: Cool. What about fundraising?
DB: We live in a majority LGBT city with a 100% LGBT city council. Thousands of people come to our annual AIDS Walk, and our annual gala raises $2 million. When we participate in Dining Out For Life, a national event to raise money for HIV/AIDS agencies, we’re in the top three cities in terms of money raised. All this allows us to maintain our Eastern medicine program with Deepak Chopra. Currently we’re doing privately funded research with him to treat chronic inflammation.
TM: Talk about your client population a little bit.
DB: What’s unique is that they’re older. The average age is 55, with some patients in their 90s. We had someone who was 100 for a while. About 90% are men who have sex with men, and 70% are white, the rest mostly Latino. So in that population, the biggest challenge is isolation. The majority of our clients are single. And with isolation can come depression, and with that, contemplation of substance use. The crystal meth epidemic is alive and well in our region. We have a substance abuse program here and also a crystal meth task force that does cool stuff, like puts on plays where they talk about what brought them to meth in the first place.
So we have thousands of people aging alone in this community. Today, they were able to get themselves out of bed, bathed, and fed, but they’ll eventually need a kind of assisted nursing-home care. For people with resources, there are nursing homes in the area with a lot of LGBT employees, but there’s not enough space for the thousands here who are aging. So that’s something we’re working on and talking about a lot.
TM: What are you most proud of in recent years?
DB: Get Tested Coachella Valley tested 80,000 people for HIV, and we identified more than 500 who were HIV positive but who’d had no idea. Our very first positive was from a local hospital. It was a grandmother — someone who’d never routinely test for HIV. We saved this region $36 million in health care by bringing these new infections into care fairly early. We privately raised $5 million to fund this effort, with 100 health care organizations, nonprofits, churches, and more taking part in order to normalize HIV testing.
TM: That’s amazing. How did you do it exactly?
DB: Our main goal was to get people already in the health care system tested. So we’d go to doctor’s offices and buy them lunch and show a PowerPoint presentation, just like pharma reps do! We said that we’d be running ads celebrating every doctor’s office who had signed on to the campaign, and can we include you guys? Then we had to work through the stigma with the doctors. “But I don’t know how to give HIV test results,” they’d say. And we’d say, “Haven’t you had to give patients cancer results or other bad news?” With the E.R.’s, it took helping them build an entire system so that every time they tested someone, they had a social worker on staff who would give the person our phone number so they could reach out for services and support. We also had 30 community testing sites at thrift shops, food banks, Planned Parenthood, etc.
TM: Very cool. So where do you feel challenged?
DB: Again, assisted care for the aging population. With members of the community, I’ve been touring facilities that care for the low-income elderly to see if there’s a way to translate those services for our LGBT population. We’re going to have a sustainable, fundable model that’ll cost millions a year. It’s gonna be our next big chapter, because this is our family. We’re not gonna say, “Oh, I’m sorry you’re 85 now, you need to find someone else to take care of you.”
TM: So you’re looking toward opening an assisted-care housing facility?
DB: We’re gonna have to — or find like-minded partners to work with. We’re a year into doing serious meetings around the idea that we need to develop 1,000 units of affordable housing.
TM: What are your goals in the next year or two?
DB: Right now, we’re adding 20,000 square feet of new clinics to our campus and we’re building 60 more affordable housing units to add to the 80 we already have on campus that we built 14 years ago. We also have some scatter-site housing throughout the area.
TM: Any stories to share?
DB: Every 90 days, we do a kind of town hall conversation with our clients, volunteers, and employees. Last week, we had an Oprah Winfrey-style conversation called, “Intergenerational Tensions in our LGBT Community.” We had a gay white male long-term survivor and then a 20-year-old transgender African-American female speak. Then we played a clip from the new “Tales of the City” series on Netflix. It was the scene of the dinner party that was all white gay men, and one brought his 28-year-old partner who scolds the older men for using the word “trannies.” And the host says to him, “When I was your age, I was going to four funerals a week. Every freedom you have was built on my back, so how dare you tell me what I can say?”
The conversation we had after was so beautiful, because so many tears of sadness were shed. Our long-term survivor said, “In that clip, I don’t see privilege — I see the pain of white gay men, the isolation, the worship of sex, youth, and materialism we use to mask what we went through.” And everyone who had gathered realized that this client had spoken a truth we could all identify with, and it allowed him to express the pain he’s still living with. Then the young trans person talked about the fear she lives with every day just to go to the grocery store. And the long-term survivor said, “Let me tell you — I can identify with your pain.”
TM: Did he understand as well the ways he couldn’t identify with her pain and struggles?
DB: Yes, he spoke about his white privilege. It was all done in a loving and healing way. There are 17,000 transgender people living in our service area. We’ve seen a 400% growth of the trans population here in the last 12 months. And that community has come forward to us and said, “We’re experiencing what you experienced in the 1980s, being denied housing and culturally competent care.” So we’ve started hiring trans staff.
Positive POV: Tim Costello
Tim Costello, 62, of Palm Springs, is retired and a DAP volunteer. He was diagnosed with HIV in 1984.
Tim Costello: I’m a triplet. I grew up in Dallas. I retired at 55 from Kaiser Permanente in Santa Rosa. I worked there 24 years in the admitting department. I volunteer three mornings a week at DAP at the welcome desk.
I was diagnosed with HIV in 1984 at San Francisco General. I’d moved to San Francisco from Dallas in 1979. People I knew from the gym started getting sick and a few months later, they were gone. I had friends who were straight and their mother got a blood product and suddenly she was sick and then she died. We didn’t know what was going on. I had older friends whom I’d go out with in the Castro and they’d say, “I’m not feeling well — something’s going on,” and then they’d move back with their family, then they’d die.
I didn’t slut around a lot, but I was definitely no angel. So when I took a test at the clinic, something strange popped up on the labs and they sent me to SF General, which was the happening spot for people with HIV, and that’s where I found out. “What does it mean?” I asked. The nurse said that I could get sick down the line. So I became cautious having sex with other guys. I became Sally Safe-Sex! I would only have oral sex, and when I told guys that we could use rubbers for intercourse, most said that they didn’t want to. Anyway, at this time, my identical twin brother, who was gay, got sick with PCP pneumonia. Turned out he had HIV as well. I invited him to SF to live with me because the resources were better here, but he didn’t. He came out here in 1985 and found it too crowded and noisy. He died at 30 in 1987.
TM: So what happened to you in the ensuing years?
TC: I remained healthy. My nurse said that they weren’t going to put me on AZT, which many people couldn’t tolerate, because my T cells were 800 or 900. So I met a gay cowboy from Sonoma and moved up there with him in 1989 and got into the gay rodeo scene. He was 12 years older than me and also had HIV. He was one of the loves of my life. We broke up in 1991, and he actually died in a horse accident in 2004.
My T cells started dropping, so I joined the study of Andrew Moss, [who led the first epidemiological study of AIDS in gay men in San Francisco]. When my T cells hit 500 in 1992, they suggested I go on AZT. So I did, and I did fine on it, my T cells staying around 500 or 600. Over the years, they would drop bit by bit. Come the late 1990s, I went on Sustiva.
So fast forward to 2015, and I was living on the Russian River in Sonoma, but I got back into drugs, crystal meth, when I was 54 and lost my truck and my mobile home. So two good friends in Palm Springs said that they were coming up to get me, because I was hanging around with the wrong people, and they moved me to Palm Springs. Now I have a vodka tonic once a day, but that’s it.
TM: What has life in Palm Springs been like for you since?
TC: I’ll be here three years this October, and Palm Springs is really growing. We’ve got a huge gay population, around 200,000, in the Coachella Valley. It feels like San Francisco in 1978. There are six gay bars on the strip here, and you can’t park here on weekends. I’m a Kaiser Permanente retiree, so I get my health care through them. My viral load is undetectable, my T cells around 500, and my weight is 180 pounds, so I’m doing pretty well, my doctor says. I feel good overall. I’m a little fat — I gained weight. I’m single. I don’t really think about sex that much anymore because I don’t see myself in the most positive light. But at the same time, I’m an optimistic person, so…
TM: What would you improve about Palm Springs?
TC: There’s a stigma here in the gay community to being older. I wouldn’t say you’re invisible, but when you go out, younger gay guys in their 20s and 30s look at you less. If you go to the gym, keep a 33-inch waist, dye your hair, and keep your teeth nice, you might be able to attract some of them. But I’ve had three lovers in my lifetime, and I don’t think much about meeting someone and falling in love. I’d rather have some good dependable friends. Older friends tell me not to tell younger guys that I have a retirement account, or they’ll be rubbing up against me. There’s a lot of hustlers here.
Also, people don’t mention HIV casually here like they do in San Francisco or Sonoma. The younger people don’t want to discuss it. They’re in their 20s and they think they’re invincible.
TM: What are your goals for the coming years?
TC: I don’t have a hobby — that’s my downfall. I don’t paint, I don’t sing, and I’m not a good cook. I’d like to make some new friends who are younger than me, but I don’t know how to do that because I’m not going to pay $120 to go to a pool party and see young guys in Speedos. I’m on a budget. As I said, I used to do gay rodeo, so on Saturday night, I’ll go to Trunks, a gay bar, when they have country-western dancing. I’ll go on a cheap cruise for a week now and then.
TM: How do you feel about being an HIV long-term survivor?
TC: I’m one of the few survivors left from the Andrew Moss study. It’s kinda weird. Even when I was in my addiction phase, I still took my HIV pills — and I’m still here. My sister says that if I ever told someone what I’ve been through, they probably wouldn’t believe it.