Successes and Challenges Facing HIV Service Providers in Greater Charlotte
We spoke with Chelsea Gulden, M.S.W., vice president of operations at RAIN (formerly known as Regional AIDS Interfaith Network), who was diagnosed with HIV in 2003.
Chelsea Gulden: Mecklenburg County is basically Charlotte and a few small towns. Charlotte is the largest banking city in the U.S. after New York. We have a huge presence from Bank of America and Wells Fargo. There's also a lot of younger tech people, so we're seeing gentrification at its best (laughs). We recently put in a light rail system. The south side of the city is mostly rich, the east side is heavily Latinx and international, the north side is the university, and the west side is predominantly African American. We're definitely more liberal than the rest of North Carolina. We were the city that passed the LGBT nondiscrimination ordinance in public facilities that set off the whole transgender bathroom ban scandal in the state.
Our HIV cases are heavily concentrated among people of color, especially young men who have sex with men (MSM). In the Latinx population, many people are diagnosed with not only HIV but AIDS. In 2015, about 33% of our Latinx clients came in with AIDS-defining illnesses, including KS [Kaposi sarcoma] and CMV [cytomegalovirus].
However, generally, once they're on treatment, they do well -- maybe one motivator is the threat of not being able to make money or seek additional health services, because many of them are undocumented. We have a lot of undocumented immigrants who do farm work outside the city. And there have been a lot of ICE raids of undocumented immigrants. In one instance, ICE came in and took a client of ours, and the client's family didn't even know he was HIV positive; he was begging a social worker here to get his medicine for him so his family wouldn't find out.
Despite this, not a lot of services are being offered in Spanish. We had a huge Latinx program run by a fabulous woman, but when she left, nobody else was doing bilingual services, so for maybe two years we lost all those people. By the time we got some funding in place to get bilingual case management back in 2013, it was like starting from scratch. But we got into the community and built trust. Then Trump got elected, and referrals stopped coming in. This happened also to the nine or 10 other nonprofits in our building that offer immigrant services. I think people were just scared. Then the visits started trickling back up. And late last year, our new county sheriff said we would stop jailing immigrants for ICE, but still, many undocumented immigrants are literally not leaving the house.
We have one individual specifically who goes out in the Latino community and has made connections with churches. We just had a community meeting at a church with a huge Latinx presence and the police were there, making sure that they were seeing our faces.
A big challenge in Charlotte is that we don't have a one-stop shop for HIV/AIDS. You have to come here or to another agency, Carolinas CARE, for case management, and to a clinical site for medical. And with PrEP, the county didn't put PrEP-prescribing doctors into the sexually transmitted infection (STI) clinics, but into the HIV clinics. So if I don't know anything about PrEP and I come to a clinic to get treated for an STI, I am told I can access PrEP, yes, but why would I make it a priority to go to one of the HIV clinics?
Transportation and housing come up the most in everyone's needs assessment. Rent is high; an average one-bedroom is $900 to $1,100 a month. You have to make $20 an hour to make a living wage. We have so many people working 1.5 jobs who still can't afford an apartment without a roommate. I live check-to-check and I'm a VP of operations. We need subsidies to pick up about half of people's rent for those who are struggling. There's been a HOPWA and Section 8 waitlist for ten years. The Section 8 waitlist opened two years ago for five days -- the first time in eight years.
Then when you add on transportation, cell phone, electricity, and food ... yes, Ryan White [CARE Act] and Medicaid provide funding for transportation, but you can be on hold an hour and a half to schedule it.
As for keeping people with HIV in care and virally suppressed, it was not going well for a very long time, but it's better now because state health officials are paying attention to it. Ryan White data in the "Getting to Zero" plan says that 85% of people who know their status are virally suppressed, but I don't think the data is necessarily accurate, because a lot of people have fallen out of care.
The population is very split. We have people who are doing great and then people who are continuously [having to] struggle. We still light a candle about once a month for a client who dies. We had a 30-year-old woman with four kids who died last year because she didn't take her meds no matter how many home visits we made. When I went to her house after she died, I collected about nine months of unopened meds. There's still a lot of trauma and stigma around taking meds for many people. We've really tried to use the U=U (HIV undetectable equals HIV untransmittable) campaign to get people to take their meds and to make HIV disclosure easier.
Another thing that complicates suppression is drug use. We're also starting to see heroin use again. We have really big needle use in our outlying counties. And we're seeing a lot of meth use in young MSM of color. We have a grant out of Duke to provide the only harm-reduction outpatient drug treatment model in the area.
As for new money from the Trump administration, I'll believe it when I see it. I would like to see test-to-treat [going straight from an HIV test to either PrEP or HIV treatment link-up] implemented. Now, if someone tests positive, the clinic we work with will give the patient a referral to us. Again, we don't have a one-stop shop. And right now, three of five of our clinics aren't taking new patients. On average, someone will go two to four weeks between diagnosis and treatment.
As for successes, we do now have a county-funded way to get PrEP out there if you don't have money or insurance. There were about 85 people in that program recently. And we do have an LGBT youth center with Monday through Friday drop-in hours and HIV services. But still, we need all the service providers here to come together and form a cohesive plan. There's no standard across the board.
Positive POV: Traye Gaines
Gaines, 52, from Charlotte, is a software tester. He was diagnosed in 2005.
Traye Gaines: I grew up in [Washington,] D.C. and moved to Charlotte in 1989, but I was partying then and there was nothing happening here, so I moved back to D.C. I had a relationship for several years where we both tested HIV negative, supposedly, so eventually we stopped using condoms. About a year after we broke up in 2004, I started dropping weight, got the shingles, had thrush in my mouth. I'd be so tired that I got home from work one Friday and didn't wake up until my twin sister, Treva, called me on Sunday afternoon. She was like, "What is going on? I haven't heard from you."
Two days later, I'm hurting all over and can't breathe, and I have a fever, so I have my best friend take me to the hospital at 2 a.m. The doctors admit me and run tests, and a few days later, they tell me that I have PCP pneumonia and Kaposi sarcoma [skin cancer associated with AIDS]. They tell me, "You're not just an HIV diagnosis, you're an AIDS diagnosis, and you've probably been HIV positive at least four years, but you're in good hands -- and you're going to be fine."
I call my ex and say, "Please tell me the truth," and he lets out this long sigh and admits that he knew he was positive as early as 1992 but was afraid I'd bounce if he told me. I was angry as hell. I was in the hospital for two months getting stable; I had to take all these meds.
I actually talked to a lawyer about pursuing charges against my ex for knowingly infecting me, but my sister, who wanted to kill him at first, said, "Just move to Charlotte," where she had moved to, "and start over." So I did. And my HIV has been under control, but I've had a lot of other challenges. I had leukemia, which they think I got from the chemo for the Kaposi. The treatment for that was horrible, with my skin falling off like it had been burned, but I recuperated. Then I suffered two deep-vein thromboses in my left leg, which put me on blood thinners for life. Then skin cancer again in my groin area in 2016. And now I need a double hip replacement, which they think is from the radiation to my groin.
Yes, I've gotten down and disgusted sometimes. But I've had the same doctor since 2006, and he said to me recently, "I admire you, because all three times I've had to tell you that you needed chemo, you said, 'Let's do it.'" I said, "What am I gonna say? I don't wanna die." But thankfully, I get support from my sister and my cousin, Terrence, and my gay friends. I have five brothers besides Treva, and when I told them about my sexuality and HIV status, they all said, "We're gonna still love you, brother." Even my sisters-in-law said it.
RAIN is great. Darlena Blackwell has been my counselor there since 2006. She even comes to my house or sends transportation for me when I'm not up to driving. One time, my ADAP [AIDS Drug Assistance Program] lapsed for some reason, so they gave me a bottle of meds until everything was sorted out. I've recommended many people to RAIN.
For my HIV care, I go to Atrium Health Carolinas Medical Center. My meds and care are covered through ADAP and Medicare disability. I really haven't had any issues living with HIV here. Charlotte is great, but you're still in the South, the Bible Belt. A lot of the African Americans here don't like to go get help or go to groups like the white HIV-positive guys do. I go to groups. I was on the RAIN client advisory board.
I have a lot of HIV-positive and negative friends. The negative ones aren't on PrEP, because they're my age and they're not having much sex! And they feel they're not going to do anything unsafe. A lot of younger gay guys, they think, so what, if they get HIV, they'll just go on the meds. I tell them, how about you go on a med before you get sick, meaning PrEP.
I'm a gamer. My favorite game is Halo. I also love shopping and have probably over 500 pairs of shoes. I like to look nice!