Twenty-eight-year-old Jayr Washington had been on PrEP for about a year and a half, adherent to his daily oral HIV prevention, when everything changed.
“When I first started taking PrEP,
I was on it consistently because I was doing heavy sex work before finding other employment,” Washington says. “Then the [COVID] pandemic shut down the city, so, it was really my only source of income. I started to miss doses. I was off PrEP for about a month and a half, taking doses here and there. As the year went on, I seroconverted.”
Washington, who is gender nonbinary and uses the pronouns they and he, lives on the West Side of Chicago, has worked as a health system navigator and HIV prevention specialist, particularly with people who are transgender and nonbinary.
“When I was diagnosed, I wasn’t really shocked,” Washington says. “Because I didn’t know how long
I had been living with HIV, I needed to get into care as soon as possible.
I didn’t want it to affect my health or affect others.” Within a week, they saw a care provider and were prescribed daily oral HIV antiretroviral treatment.
“I was like, Well, this PrEP all over again,” they say. But not in a negative way at first. Like oral PrEP, they saw their new HIV medication as a one-pill-a-day solution against HIV. Over time, though, that pill became a daily reminder of their HIV status. As they became increasingly busy having started a new job, they began to worry about adherence and to fear that missing doses might lead to the virus developing resistance to the medication.
“It used to tear me down, like, Damn, I gotta get up and take this pill in the morning,” they say. “That’s when I had to sit down with my provider and I told them that I think I’m ready for the shot,” they say, referring to long-acting injectable (LAI) treatment for HIV.
Currently, there is one complete LAI regimen, in the form of two injections, one administered to each butt muscle every two months, a combination of the HIV drugs cabotegravir and rilpivirine marketed under the brand name Cabenuva. Another LAI drug, lenacapivir (brand name Sunlenca) is a single shot administered every six months but must be accompanied by daily oral HIV medications for now.
‘Knowing my status is one thing, but when you see your medication, it’s a different type of feeling.’
After three and a half years on oral HIV medication, Washington started receiving long-acting treatment at Heartland Health Alliance’s James West clinic, just west of downtown Chicago.
“I don’t have to worry about re-traumatizing myself every day,” they say. “Knowing my status is one thing, but when you see your medication, it’s a different type of feeling.”
“It was very liberating, because I’m taking care of myself,” they say about their first visit to the clinic to receive treatment. “I was nervous at first, but I was like, Let’s get this over with. There was more fluid in the shot than I expected. The first shot, on my right butt cheek, wasn’t as painful as I thought it was going to be, but that second shot—I’m not used to shots on my left side. I was like, Oh, I feel it, I feel it! But at the end of the day, it was something that I knew would be very beneficial to me in the long run.”
The bus ride home was somewhat painful. “Sitting down the first time was painful, but after I got home and massaged it and the medication started going through my body; after a day or two, it was cool.
“The space that I’m in now, I’m very happy,” they add. “Yes, I know that I’m positive, but I’m in care. I’m healthy and I’m taking care of myself. I have to do what’s best for me. Being on the injectable is the best and is the most effective treatment for me.”
They credit their care provider and Heartland with much of that success. Although the clinic maintains normal business hours Monday through Friday, Washington is able to receive treatment on Saturday mornings, so that they don’t have to miss work during the week, something they’re not able to do with a new job. They acknowledge that without the clinic being available beyond normal 8-to-5 weekday hours, accessing long-acting treatment would be much more difficult.
Washington also stresses the importance of the patient-provider relationship.
“Thank goodness I have a great provider who understands me, who listens to me,” they say. “Even though the doctor is not of my demographic, she can relate to me because she’s had so many patients who are trans, nonbinary; she’s very familiar with the community. I need to be around a provider who’s culturally competent and who’s familiar with my community, who understands my community’s needs and not what they think we need. I feel that in order to be a great provider, you have to be able to listen, actively listen, and understand what your clients are telling you.”
Washington slips into their activist role as they call out providers whose lack of knowledge or personal biases can negatively affect patient care.
“I’ve worked with clients who had providers who didn’t know what PrEP was. You’re a doctor; how don’t you know about PrEP or PEP?” They share the experience of one client, a cisgender woman, who asked her physician that she be tested for HIV. The doctor was dismissive. “The doctor told her, What do you want to get tested for? That’s a gay thing, that’s your least concern,” Washington says. “The H in HIV stands for Human. Anyone is HIV possible.”
It’s in this role as activist, on the West Side, among trans and nonbinary folk and on social media, that Washington is finding themselves.
“I’ve seen a lot of my friends pass away from not taking their medications,” they say. “The fact that I’m being open and vulnerable about it, maybe that can rub off on someone else to be comfortable enough to share their story, especially in our community.”
At 28, they see themselves in a unique position—between older generations “that paved the way for me to be my authentic self” and a younger generation “who will look up to me because I’m right before them and see that it is okay to live with HIV.
“This is a pivotal moment in my life right now, when I’m being vulnerable and resilient about my status,” they add. “I’ve never talked about it much. I’m in care, I’m healthy. I’m active, still doing what I used to do, but more honestly. This is very liberating for me. I love that word. Liberating.”