Successes and Challenges Facing HIV Service Providers in Clark County, Nevada
We talked with Antioco Carrillo, executive director of Aid for AIDS of Nevada (AFAN).
Antioco Carrillo: I’ve been the E.D. here since 2012. Before that, I was doing counseling and managing an HIV-related therapy center for more than 20 years. I’ve been working on HIV prevention, counseling, and care for more than 25 years in the Vegas area. I was born and raised in Mexico but have been in Vegas since 1987.
Tim Murphy: Cool. What is AFAN’s history?
AC: The organization was established in 1984 by volunteers, people who were trying to take care of their HIV-positive friends and family. I think the first E.D. had been a bartender at one of the local gay bars, where they were seeing all kinds of struggles: people getting kicked out of their homes and living in garages, nobody wanting to touch them, no services. And the gay community decided they needed to take care of themselves. There were a few doctors who were gay who organized the entire process.
It was just direct services and food at the beginning, providing comfort, but they slowly formalized it and started creating an infrastructure, including HIV prevention and case management. I started here by accident. I was working in the previous organization as a volunteer, because my ex knew the director, and I met the director, who said he needed someone bilingual to do outreach. I didn’t even know what the hell outreach meant. I was tutoring Spanish and going to college at the same time. So I started with a Red Cross training. In 1995, an outreach team was formed between AFAN, the health department, and the community counseling center where I was working.
Our annual budget is $1.2 million, mostly from Ryan White and HOPWA. We also have two main fundraising events, the AIDS Walk in spring, which attracts about 3,500 people, and the Black and White Party at the end of summer, which attracts 2,000 to 2,500 people. The magician duo Penn and Teller have been our mascots the past 20 years.
Between services for HIV-positive clients and testing, we serve about 1,200 people a year. No organization in the city gets prevention funds. AIDS Healthcare Foundation did a PrEP [pre-exposure prophylaxis] poster campaign on bus shelters, but there’ve been no other PrEP outreach efforts in the city.
More than 40% of our clients are African American, 73% male, 67% men who have sex with men (MSM), and 27% female. The staff of 17 includes six Hispanics, six African Americans, and five white people. Four staffers are LGBTQ. I have HIV-positive folks on staff, but they’re not open about it. We have no transgender staffers currently, although we’ve had a few via our internship program. We’re actively looking to be a more diverse agency.
TM: What is your gamut of services?
AC: We have programs for intensive case management, mental health, and food, transportation, and housing—a 20-unit permanent housing project of our own that’s always packed. It’s for medically fragile clients who can’t work. Another community provider has another housing project, Golden Rainbow.
We also have free HIV testing and a twice-monthly “Lunch and Learn” event for clients, sponsored by pharma companies. We have no PrEP program, but we’re looking into it—and we talk about PrEP when we do our big events. Currently, we refer people across the hall to the Huntridge Family Clinic for PrEP.
TM: Cool. How would you describe the current HIV situation in Vegas?
AC: The number of new cases has gone up steadily in recent years. Last year, there were about 500, climbing up from the 300s. It’s mostly young gay African-American and Hispanic men, but is that because we expanded test sites and more people are getting tested?
TM: What about PrEP uptake in Vegas?
AC: With the lack of understanding that there is [financial] help for PrEP, people are reluctant. I have a staff member who decided he was going to get on PrEP because he wanted to know [what the process was to get on it], and as he did, he started realizing that it’s confusing. Not enough people know that you can get PrEP free or low-cost, because there’s been no PSA campaign—but we’re looking into that right now.
TM: What about the situation with injection-drug users (IDUs)?
AC: Actually, a year ago, we were the first agency to start a needle-exchange vending machine where people come with their own card, punch in a code, and get clean needles, no questions asked. We have people from all walks of life using that, including people who were taking care of sick loved ones and couldn’t afford to buy needles, as well as transgender individuals using needles for hormone injections.
The drug of choice in this part of the country is meth, which a lot of MSM use. I think the link between HIV and meth use is increasing. There are treatment centers, but we don’t have programs for MSM and meth use, and there are no poster campaigns either.
TM: Are you among the many agencies nationwide who have heard from immigrant clients that they are afraid to access services because they’ve heard about Trump’s proposal to withhold green cards from “public charge” immigrants who access government benefits?
AC: Yes, absolutely. When we do events, we have mobile testing units with AIDS Healthcare Foundation, and people say, “I didn’t want to go to the health department or the hospital, because I have no insurance, and I’m afraid I’ll be deported—and I can’t afford to be deported.” We ask our clients to take it back to family and friends that we are not going to call Immigration and Customs Enforcement [ICE] or the cops on them.
TM: Where have you had success in recent years?
AC: We created a mental health program. There was no other organization that was able to provide both LGBT- and HIV-competent mental health services, including crisis support if you test positive. We also started doing HIV testing. We also worked with the city government to get all the hotel marquees to change their lights to red every year on World AIDS Day.
TM: Where do you feel challenged or frustrated?
AC: There’s not enough funding to do prevention awareness like there was from the CDC [Centers for Disease Control and Prevention] in the 1990s and early 2000s. All those funds now go into medical prevention. When you walk around Vegas, you see all the advertising for hedonism. It’s very sexualized. And yes that hedonism puts food on our tables, but at the same time, how do we publicize the importance of being aware of HIV? As far as I’m concerned, a bus shelter is not enough. Nothing sexy exists to give contacts related to HIV or STIs. We have to be at the same level as the rest of the advertising in this town. I want to be able to create a catchy media campaign, the HIV version of ads with numbers for escorts.
TM: Have you ever reached out to area ad agencies to see if they would take that on pro bono?
AC: Sometimes if they have unused billboards, they’ll use our images, but not for a long time. I’ve said to community partners that we need to do something like that [with HIV advertising] and treat it as a business. We’re also number one in the country for syphilis, and there’s nothing addressing that.
TM: Which leads into the next question: What would you do with new unrestricted funding?
AC: We’d revamp our infrastructure in terms of giving people access to care and treatment. When they go to the E.R. now, they don’t get tested. So we’d do training and education with E.R. personnel to do rapid HIV testing. It took Nevada forever to get a law passed requiring HIV testing of pregnant women, and they can still opt out if they want. And like I just said, I would like to be at the same level as the private companies in the city when it comes to advertising our services.
TM: Can you share any stories to illustrate the work you do?
AC: Our clients are very resilient. When I was working at my old job as a counselor, I had several clients who were already long-term survivors. When I left, I stopped seeing them, so it’s always refreshing for me when they come in here and make sure to look for me to say hello and thank us for our efforts—including help for their kids. Despite all the trouble, through the years, we’ve been able to create a system that brings people together despite stigma. That’s a blessing. It makes me think that everything we’ve done since 1984 has been to keep people alive.
One client in particular, in my last job as a counselor, it was a struggle for him to stay alive and connected, because of shame. He didn’t want to be a burden to society. I counseled him a lot, and it was so impactful that he eventually called me and told me he’d gotten into a university program with a scholarship. He said it was because of what everyone here had done for him, and he wanted to be able to give back. That was so great. Years later, once I was at AFAN, he emailed me, saying, “You probably don’t remember me, but I want you to know that I finished my degree, married the man who was the love of my life, moved to London, and now I work counseling HIV-positive people here.”
TM: How do you think your work has changed and shaped you as a person?
AC: The most profound thing is that I don’t have to rush through my life as I did before I started working with HIV. I’ve realized there’s no distinction between someone positive and negative. Once I was running an HIV-positive support group, and one client, in response to “What is it like to be positive?” said, “You live the best life you can, and at the end of the day you close your eyes and ask, ‘Did you do the best you could do, take advantage of all your potential, and make a difference?’” He would say, “You never know if you’re going to wake up tomorrow.” And that changed my perspective. I have my goals I rush to achieve at a rapid pace, but I still have to visit my mother, who is 82. I wasn’t aware of the importance of paying attention to my personal relationships until I started working in HIV. So I still have ambitions, but I have to remember that today may be my last, what with shootings, accidents, all kids of horrible things. In that way, I’m the same as someone with HIV.
TM: So you’re saying your work has made you more appreciative of life?
Positive POV: Anne
We spoke with Anne (a variation on her real name), 58, of Las Vegas, who is an AFAN client. She was diagnosed in 1990.
Anne: I’ve been living with HIV for 29 years. I’m originally from New Orleans (NOLA) but moved to Vegas after [Hurricane] Katrina. I’m on disability, but I do a lot of volunteering. I’m on the Ryan White Planning Council, and I’m very involved with women’s support groups at AFAN and at Community Medical Outreach. I was trained to give rapid HIV testing.
I was four months pregnant with identical twin girls, living in NOLA, when I was diagnosed with HIV in 1990. I thought I was dying. I cried. I didn’t tell my momma because of the stigma. I didn’t stop working. My twins were born negative, but I started smoking cigarettes out of stress. I tried crack for a little while, but drugs really weren’t my thing. I smoke a little weed now and then. It’s legal now here in Vegas, thank God.
Tim Murphy: So did you tell anyone about your diagnosis?
Anne: I told nobody the first year or two. I cried every day. At night I’d go to an agency in NOLA called FACES for their support group. All I knew was that HIV/AIDS was a gay man’s disease, but there were other women in the group. I was Dr. Rebecca Clark’s first lady patient.
So this group gave me a more positive outlook, but it was still scary. Thankfully, I never got sick from HIV. I didn’t start taking HIV meds until 2011. I went on Atripla, and it almost killed me. I think I was allergic to the Sustiva in Atripla. So I switched to Isentress and Truvada, then from Truvada to Descovy, and I’m fine. My T cells are 1,299, and I’m undetectable.
TM: When did you start telling people about your status?
Anne: I told my mother right after I had the twins. I had to bring them to the doctor once a week for them to get AZT [to keep from becoming positive]. Four years later, I had another child, my only son. I took AZT, and he’s negative too.
TM: What has been the hardest thing about living with HIV all these years?
Anne: The stigma. Everyone thinks you’ve been doing something like shooting drugs or tricking—I never did those things.
TM: What’s been your greatest source of support?
Anne: Here in Vegas, the different support groups and the planning council. I’ve spoken to teenagers at the women’s shelter. Two weeks ago, a woman in her early 30s had just found out she was positive. They called me, and when I left, I had her smiling and laughing. I told her how long I’ve been living with it and let her know it’s not a death sentence, as long as you get your treatment and see your doctor.
TM: What do you think is the biggest thing we need to do to end the epidemic?
Anne: We’re doing a lot here in Vegas on the 90-90-90 campaign. But we need more posters and campaigns. And we need to stop putting actors in the HIV drug ads and use people who are actually living with HIV.
TM: Would you be open to doing that?
Anne: Not right now. I’m too busy raising my grandson, and I don’t want the backlash that might come with that. Once he’s grown.
TM: What do you think heterosexual women need to know about HIV?
Anne: Use condoms, and watch who you sleep around with. Maybe if I’d been taught about condoms, I wouldn’t be positive now. And I think women who are doing drugs or working or living on the streets should go on PrEP.
TM: What do you do for self-care and joy, Anne?
Anne: I love to get my hair fixed. I love dancing and drinking Patron shots on the weekend. And I love the people in my support group from the LGBT community, even though I’m not gay. I gamble, I go to parties, I like to dance hip-hop—all that. I go home to NOLA for Mardi Gras. I miss NOLA, but the wages are too low, and the houses aren’t good. I have a better life here in Vegas.
TM: What do you make of your life up to this point?
Anne: I want to continue learning more and try to help someone else—give ’em my story and hope it helps more people.