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 South Carolina
Poor, rural, religiously conservative, and without expanded Medicaid, South Carolina has barely begun to address its HIV epidemic—especially among young gay and bisexual men of color who have been left underinformed about pre-exposure prophylaxis (PrEP).
Need-to-Know Stats About HIV in South Carolina:
New HIV infections in the state, ranked sixth nationally for HIV/AIDS prevalence, have remained flat at around 750 a year since 1997.
The state population is 64% white, 27% black, and 6% Hispanic, but those living with HIV are 69% black, 25% white, and 4% Hispanic. 53% of cases are in men who have sex with men, 31% are in those who contracted HIV through heterosexual sex.
Cases are concentrated in the central part of the state in and around Columbia, and along the coast north and south of Charleston.
77% of those diagnosed in 2015 and 2016 were men who have sex with men.
From 2005 to 2015, between 10% and 20% of high school students reported never having been taught about HIV/AIDS in school—and generally not more than 60% reported using condoms during sex.
As of 2016, of all people living with HIV/AIDS in South Carolina, 66% had ever received any care, 54% were retained in care, and 53% were virally suppressed. These rates were similar among blacks and whites, but somewhat lower among Hispanics.
Of those diagnosed with HIV in 2016, 90% were linked to care within three months.
Health officials in South Carolina and North Carolina came together this year to work out a plan to reduce new HIV infections in both states by 90% in the next 10 years.
Successes and Challenges Facing HIV Service Providers in South Carolina
We talked with Carmen Julious, M.S.W., CEO of Palmetto AIDS Life Support Services (PALSS), in Columbia, South Carolina.
Carmen Julious: I’ve been the CEO here since 1999. I started in HIV in 1990, working at a community health center for homeless persons, when I realized I had a huge population of people living with HIV—but I knew nothing about it except what I saw on the news, so I had to learn a lot really fast. Almost half of my caseload of 90 people were HIV positive, from all over the state, and our doctor in Columbia was one of the few who would see people with HIV/AIDS, so we had people come to see him from as far as North Carolina and Georgia. I guess I didn’t realize that people were coming from so far because they were afraid that folks in their own communities were going to find out. They would literally climb over the fence in the back to come in the back door, because word got out that the AIDS doctor was here on Wednesdays, so it was assumed anyone who came in on a Wednesday had AIDS.
Tim Murphy: Do you remember your first encounter with someone who had HIV/AIDS?
CJ: I remember a young man who’d come from Orangeburg, 45 miles away. He was very well-dressed and had a good job and health insurance, but here he was in a homeless shelter to see our doctor. This was when the only treatment was AZT, very expensive, and people didn’t want to submit insurance claims with AZT on them, because then their employers would find out.
TM: Wow. So what is the origin story of PALSS?
CJ: It started in 1985. There was a man from Lexington County, adjacent to Richland (where Columbia is), so he came home to die, and his family struggled to find services for him. There was no place to turn for information or services. They were just kind of lost. Eventually, he died, and his family—which has never publicly put their name out there—decided that they didn’t want another family to go through what they had. They thought they were only starting a support group—that’s why it’s called PALSS—but they found that there was a need for all kinds of services: food, rent, clothing, therapy, medical.
So that’s how it grew. It started out all-volunteer, then it hired its first executive director, Bill Edens Jr., who was living with HIV himself and operated the agency out of the trunk of his car for a while. But his family was well-known and he had some connections, so he was able to get the owner of a hotel to provide a room at no cost to operate the agency out of, and eventually we were able to garner donations from drag-queen fundraisers so we could eventually pay the rent on a real office.
Nobody else was providing services. Nobody at the state or county health department knew anything. The University of South Carolina med school was very disconnected [from the epidemic] until about the early ’90s, when federal funding started.
I came in as a case manager in 1995. The community was very afraid of who we were and who we served. We came to work one day and someone had thrown a section of telephone pole through our front door. People would call and say the most horrible things. Staff had their cars damaged. It was almost like you were afraid to tell people you worked there.
TM: What did the client population look like at that time in the mid-late ’90s?
CJ: About half white and half black. It’s currently primarily African American. I remember being in a meeting where someone said, “PALSS is going to have to decide: Does it serve white gay males or black people?” This was probably the late ’90s or early 2000s. Also, when I started, it was about 80% male and 20% female, but now it’s pretty even. We actually started a late-night and weekend clinic in 2009 just for men, because we wanted to address the specific needs of men who have sex with men (MSM). We don’t turn away women if they come, though. We’ve been trying to get funding to do a similar after-work-hours clinic for women.
We finally made it to a $2 million annual budget this year. The majority is government funding. Our private fundraising has decreased dramatically over the last many years. We have a staff of 20, about half men and half women. Four are LGBTQ—with currently no transgender people, although I just interviewed a trans person this week for a job. The staff is primarily African American. Six staffers are openly living with HIV. Staffers here with HIV don’t get stuck in peer positions like at other organizations—we try to grow them into all levels of staff.
TM: Cool. What about clients?
CJ: We have 400 to 500 people in our housing program, about 90 patients receiving medical care from us, about eight patients in our small, new mental health program, and about 40 in our PrEP program. We HIV-test thousands of people a year. About 90% of clients now are African American, but we have more white people who come for testing or for PrEP. About 40% of our clients self-identify as MSM. We have very few trans clients, especially since our one trans staffer moved on. We had to let go of two-thirds of our staff in 2015 when we lost a major source of funding.
TM: What is your gamut of services?
CJ: Under our counseling and testing program, we have HIV, STI, and hep C testing. Staffers go out into the community and do outreach and testing, often to places we know others won’t go, like the methadone clinic. We’re currently trying to get permission to access their waiting room. The county jail occasionally allows us in to do HIV testing. We also try to focus in rural areas.
Then we have our housing program, which provides short-term rent, mortgage, and utility bills assistance, with a full pantry where anyone who receives any services from us is eligible to access, even if they just come in for an HIV test. We do transportation to and from medical appointments. We do behavioral health with trained social worker therapists who provide counseling around any issue. You don’t have to be living with HIV. You could be a caregiver or a family member. We help people locate and access housing, and we also train people in making and keeping a budget.
Then we have a care coordination program where we provide not only the medical care but support for insurance premiums, copays, deductibles, lab bills. We started doing primary care in 2017. We’re not a federally qualified health center (FQHC), but our board is working on that now.
As for our PrEP program, which we started in 2017, we thought we would have five to 10 folks in it, and we now have 40. We’re getting ready to do a marketing campaign to get the word out about PrEP. It’s amazing how many people say, “Yeah, I heard about it, but I didn’t know what it was.” Most who come in have gotten the info from word of mouth. We’re trying to market it in communities where we haven’t seen a lot of uptake, particularly among women, who tell us, “My provider said it wasn’t for me.” One told us that her provider told her she wasn’t eligible for it!
TM: Have there been any good PrEP campaigns in the area?
CJ: Nope. We’re trying to do something with our limited funds. First we’ll do some posters on bus benches, then we hope to hit the print, radio, and TV free-media circuit. Then we’ll do a meeting with some of the area social services directors. We want to get their staff to understand PrEP so they can help begin conversations. And that’s a fine line to walk, because we don’t want people to think that the department of social services won’t cut their [assistance] check if they don’t go on PrEP.
TM: How would you describe HIV in South Carolina?
CJ: I think it’s increasing among people 50 and over, as well as among younger people. Even though the rate among African-American women has leveled off, it’s done so at a high level. A couple years ago, we saw a spike in cases in the over-50 crowd along the coast—and here in the midlands, we’ve got the army base, Ft. Jackson, with lots of traffic, families, and moneymakers right off I-95.
We’re also in the throes of the opioid epidemic. There is absolutely no needle exchange in the state. None. [Ed.: Read [this story] about the man who is illegally running the state’s only needle exchange. You will go to jail if you offer that. And this is even though our state health department has identified the opioid epidemic as a factor [blocking] ending the epidemic. I have no idea if anyone in the state is lobbying for needle exchange.
TM: What is the situation in the state with HIV among young MSM of color, the most affected group?
CJ: We know that once young MSM are able to talk about PrEP with someone they feel they can trust, they’re more interested in it. There’s a lot of misinformation out there, such as it costing [the user] so much, which it usually doesn’t. We need to find trusted messengers to talk about PrEP in their communities. We’re doing a virtual town hall on Dec. 1 for World AIDS Day, and we intend to talk about PrEP and have on the panel both a pharmacist and a young MSM who’s very open about his PrEP use and wants to spread the message that you can love safely.
TM: Do you have a little team of PrEP messengers out in the field?
CJ: Not yet, but we’re absolutely talking about it.
TM: And what’s needed to bring down HIV rates among women in the state?
CJ: We have our so-called WISE Women, who are primarily women living with HIV who do outreach in the community at places like laundromats, encourage other women to get tested. Women are often in relationships with a power imbalance, taught that the man is not to be questioned, and African-American women in particular have less access to resources.
TM: So you’ve seen that domestic abuse is often a part of a woman’s HIV story?
CJ: Yes, and abuse from childhood, trauma. We spent this whole summer training ourselves on providing trauma-informed services. Everyone in our client caseload has trauma, and we realized we had to get counselors to understand that everyone’s life is not like theirs. And we had to figure out how some of our own trauma keeps us from giving the best services. At the heart of it was that we needed to think not what was wrong with a person, but what had happened to them.
TM: Identifying resiliency is also a part of it as well, yes?
CJ: Absolutely, because if you made it through trauma to this moment, you have some strength. We often identify a person as “at risk,” but that’s not the whole person. You have to understand why someone presents as angry or doesn’t follow their regimen. Maybe being late, missed appointments, are an expression of depression—or of someone saying, “I’m not gonna do what you told me, because I’m gonna control my own life for once.”
TM: OK, so brag a bit about what you’ve accomplished at the agency.
CJ: Well—[she starts to cry], we’re here. It took a lot of courage for us to come through some really hard times. But we believed in ourselves, and people in the community believed in us. We came very close to closing when we lost two-thirds of the staff. Where would our clients have gone? We have a vision for our community that is not necessarily just calling out, “OK, client #187, next!” That’s not how we operate or how I want to be treated or how we want our family members to be treated. We worried that, if we closed, other providers around town would not understand that.
TM: Congratulations on surviving! Now where do you feel really challenged or stuck?
CJ: We’ve had a vision of creating a safe haven or center for transgender persons that we haven’t been able to do. We also haven’t been able to provide better access to housing for clients. Many of us [staffers] go home every night to a house, but we drive past clients who are walking to the shelter. Housing is a major issue in our community for all people with limited resources, not just those living with HIV.
TM: What would you use new funds for?
CJ: I’d purchase a building so that we could grow and stop having to pay rent, which would free up some of our budget. And in that beautiful building in my head, we’d be able to create a transgender center to not just give services, but where people could socialize. We don’t have a true LGBT-friendly area or “gayborhood” in Columbia. We have the Harriet Hancock LGBT Center, which is a wonderful institution, but it’s just one place.
And I’d certainly focus on diversifying our staff, because often we just don’t have the money to hire people.
TM: What has it been like for you as a straight woman interacting with the LGBT community?
CJ: I knew that community peripherally through family or friends before doing this work, and I still say that I’m on the periphery. People say to me, “You’re an expert on gay men,” and I say, “I’m just a tourist.” I’ve learned to be humble and in a stance of learning and listening. I don’t get a free pass. But this work has allowed me to see the world differently, and that’s a gift. I know that might sound corny.
TM: Not at all. Can you tell us a story or two that illustrates the work you do?
CJ: I always think of this one person from the early ’90s when I was working at the community health center for homeless people. An older man from New York came in, and a nurse was trying to draw his blood. “You need to calm him down,” she said to me, so I went in. He said, “Give me the needle—I’m a New York junkie, and I can hit my own vein.” So the nurse gave him the needle and he hit his vein the first time. After that, he became my client. He was a drug user, and one day I went to the rooming house where he was living, which was known for drug use, to bring him some nutritional supplements. When I got there, the men on the porch started saying things to me that men tend to say when they think women are defenseless.
Anyway, he came out of the house with a trickle of blood from his inner elbow. He shut down all the foolishness from the other men and said to me, “Next time you call me, I’ll meet you on the corner,” and he walked away.
A few weeks after, I brought him some shoes. His were raggedy, and he said that because he was a size 14, nobody had his size. But I found some, and after I told the store owner who they were for, he wouldn’t let me pay for them. So I brought them to him and he said, “They won’t fit,” but they did, and he said, “God smiled on me today” and wore those shoes forever. He died that November. And I’ve always remembered him. I don’t know why, but I feel like he’s why I’m supposed to be here doing what I do.
Positive POV: Shawn Torres
We talked with the Rev. Shawn Torres, 28, of Aiken, South Carolina (45 minutes from Columbia), who is a capacity-building specialist for the Latino Commission on AIDS and associate minister at First Nazareth Baptist Church in Columbia. He was diagnosed with HIV in 2009.
Shawn Torres: I grew up in Philadelphia. My doctor called me three days before I was leaving for my first year at Benedict College in Columbia, South Carolina. I’d gotten a physical for school three months before, but they waited to tell me I’d tested HIV positive.
Tim Murphy: What? Why did they wait so long to tell you? That’s insane.
ST: That’s always been my question. I went back and asked them, but they never told me. They just gave me the name of an HIV agency in South Carolina. I accepted it at the time, but I got angry about it later when I started working in the HIV field.
TM: What was your reaction to the diagnosis?
ST: I didn’t have one per se, because in three days I was moving to a new city to go to a new school in a new state. I didn’t have time to process the diagnosis. But I wasn’t shocked or surprised. I’d had STIs prior to that. I’d been sexually active in high school, sometimes without condoms.
TM: Did you have a sense that you were putting yourself at risk for HIV?
ST: No. In our high school, messaging about sex ed was always about heterosexual sex. I wish we’d had more of a comprehensive sex ed class. I didn’t have health class until 11th grade. We didn’t touch on HIV or LGBT stuff in health at all, it was only about sex and STIs between men and women.
TM: Wow. Did you tell anyone about your diagnosis?
ST: No one. My family is very religious. I remember hearing that HIV was your punishment if you were gay. I heard that both in my family and in my church. So two weeks after arriving at college, I went to the agency, the South Carolina HIV/AIDS Council. I was still on my mother’s insurance, and they said they were going to put me on ADAP instead so my mother wouldn’t find out I had HIV—no conversation about whether I wanted to disclose to her. I was put on an HIV regimen, but I had bad side effects so I took myself off it.
Then, via the Baptist church I had joined in Columbia, where I joined the HIV/AIDS ministry [but without telling anyone he was positive], I met Carmen Julious from PALSS and I came out as positive to her. She invited me to speak in a prison about HIV, which brought me into contact with PALSS, where I also became a client. And then after college graduation, I got a job there as a client navigator. I’m also a board member.
TM: What was PALSS like for you?
ST: Welcoming, friendly. There were support groups, STI testing, a food pantry, community events. But then my mother found my HIV meds when she came down for my graduation, and we had a conversation that by that point I was ready to have with her, because I’d talked about it [with] Carmen. My mom’s reaction was not too pleasant. She said she already knew about my sexuality, which she was angry about, but she didn’t know I was living with HIV. There were tears. She told me about other family members who were living with or who had died of HIV. Now we actually have a perfect relationship. I’m married and she knows my husband.
TM: Did having HIV affect your college experience?
ST: No. I had a great support system with PALSS. I was on meds and virally suppressed. But I told nobody. I had sex and dated, but only with other HIV-positive people I met via support groups.
So I worked for PALSS for a year, then moved to New York City for grad school at Union Theological Seminary. It was a wonderful experience. I was able to dig deeper into pastoral ministry and practical theology. That’s when I came out publicly as HIV positive. It was wonderful being around people who loved on me and supported me and allowed my work to be recognized. That was something I needed.
But I knew that I was going back to South Carolina because, A) New York was too expensive, and B) I needed to be reconnected to the place where people sent me to seminary and compelled me to go get more education. My church in Columbia is a traditional Southern Baptist church with 6,000 members. Folks there know I’m gay and HIV positive, along with some other people, and it’s not LGBT-affirming, but it’s not homophobic either. I’m personally comfortable with it. In the South, a lot of pastors are traditional, and we have to wait for the next generation of pastors [to be more open and accepting].
TM: You haven’t ever wanted to join an explicitly LGBT-affirming church?
ST: No. When I was in seminary, I interned at LGBT-affirming churches, but a lot of them still preach and teach the same heteronormative point of view. And there aren’t many affirming churches in the South. I love my church and am accepted and loved there.
TM: And you have a husband?
ST: We’ve known each other for years through church circles over social media, but we didn’t meet in person until I moved back to South Carolina. We got married Aug. 31 of this year and we live together now. He’s HIV negative.
TM: Can you tell us about your work for the Latino Commission on AIDS?
ST: I’m Afro-Latino. We provide capacity-building services to HIV/AIDS organizations and departments of health in the South, not specifically for Latino communities. We have a wide range of services. I work from home.
TM: Do you do stuff around PrEP?
ST: We do PrEP access around acceptability, accessibility, and availability. Availability of PrEP is higher in the North than in the South, where we know that 52% of all new HIV diagnoses happen. States like South Carolina that have not expanded Medicaid make it harder for people to receive PrEP or other meds. And a lot of providers in the South still don’t believe that PrEP works, so we do PrEP capacity-building at different agencies to provide technical assistance for that issue.
TM: What’s your take on HIV in South Carolina and the groups most impacted?
ST: Richland County, where Columbia is, is the number-one county in the state for new infections. The state has no “Ending the Epidemic” plan. I think the health departments are trying to come up with something. Most impacted are black and Latino people, MSM, cis women, and trans women. This is a large state. PALSS alone covers seven counties, which is a lot of ground for an agency of that size. The state is very rural, with virtually [no] public transport systems, which leaves the burden on the agencies, which can be a strain on resources. I have to drive 35 to 45 minutes to pick up a client and bring them back.
And some areas don’t have internet, so people rely on word of mouth for health info.
TM: What do you think is behind higher rates of new diagnoses in young men of color in the state?
ST: The lack of access to information and services. Black and Latino men don’t have riskier sex than white folks, but social determinants of health play a big part in why our communities have higher rates: Food deserts and information deserts. Fear and stigma. We’re also a very religious state where we don’t have healthy and open conversations around sex and sexuality, so people put themselves at higher risk of HIV, because they can’t have sex in their own homes [around family] ... so they do it in public places. HIV is just more present in our communities, also increasing the chances of transmission. Our community viral load is higher than in white communities.
TM: There have been no major PSA campaigns in the state around getting tested, being undetectable, PrEP?
ST: Nothing at all. The first thing we had was the [national] commercial for PrEP that came on during [the TV show] Pose. That shouldn’t be the only place [you hear about that].
TM: What would you do in South Carolina with a magic wand—all the money and power?
ST: I would give free health care and access to health information, transport that connects counties, because I know of only three counties that have public transport. And I’d do more training for capacity-building around comprehensive sex ed, including sexual orientation and gender identity.
TM: What are your goals for the next five years?
ST: To finish a second master’s in public health and to get a doctorate in public health, too, so I can do more research. I’m not 100% comfortable with my writing, which is connected to research. I want to be the executive director of an agency. If I started one, it would be about building healthier religious communities that engage biblical text coupled with information around healthy sexuality within black churches.
I also want to have children with my husband, have a family to call my own.
TM: What do you do for self-care and joy?
ST: I derive joy from my religious community, being on the ministerial team, and from playing spades with my friends every week. Also spending time and traveling with my husband. Since we got married in August, we’ve been to New Orleans, Atlanta, NYC, and Miami. He has a new job as a flight attendant, so we’ll do international travel as well. I’m also in various group chats with family and friends, which gives me joy. And so does being able to disconnect and lie in my bed after a long day.
TM: What do you make of your life up to this point, Reverend Torres?
ST: There have been some rough patches, but I’m privileged to have community support. I have two degrees and I’m working on a third, so I know I’m privileged in that way. Even though I’m black and gay, I’m cisgender, so I’m not vulnerable to transphobia. I know that not everyone has access to communities that are not HIV-phobic, homophobic, and transphobic. My life turned out better than predicted.