‘We have to do a better job of educating the HIV workforce and reducing stigma’
As I casually strolled down Hollywood Boulevard on an uneventful day in Los Angeles, I received a phone call from one of my best platonic friends. I answered, and the muffled voice on the other end blurted out three words that changed my life forever: “I have HIV.”
Our silence was deafening. When I finally came to, I looked up and found myself standing directly in front of the Los Angeles LGBT Center. Was this a sign from God? Should I go in—find out my own fate? I took a deep breath, walked up the stairs and asked the receptionist where the HIV testing department was located. She pointed toward the elevator. At that moment, I realized that the nightmare I had tried to forget was about to come back to haunt me.
Before I even walked into the Los Angeles LGBT Center, I knew I was infected with HIV. Only 21 years old, I already felt it in my spirit; two years prior, I had felt it in my body. The rape I endured at 19 will live with me forever. My parents took me to the hospital when I became deathly ill the week afterward. The hospital ran all sorts of tests—except, I would learn later, an HIV test.
Two years would pass before I was tested for HIV. I tested positive. Until then, I had never knowingly met anyone living with the disease. It was rarely discussed in school and never discussed at home. By the time I received my diagnosis, my T-cell count had dropped to 280 and my viral load was over 500,000.
Since my diagnosis, I’ve navigated through the sometimes unforgiving health-care system, experiencing at various levels of quality and success what I now know to be the five steps of the HIV care continuum: diagnosis, linkage to care, retention in care, going on HIV-fighting ARVs and ultimately reaching viral suppression.
I was prescribed medication and connected to a therapist as soon as I was diagnosed. But I felt like a number, a deliverable in an agency’s grant. The therapist never looked at me; I stopped going because I didn’t feel that he cared. Still in shock and lacking support, I acted as if my diagnosis had never happened. I didn’t take my meds.
I didn’t change my perspective until three years later, when a friend my age with HIV died of pneumonia. I sought treatment but I didn’t have insurance, so I was left dangling in the wind, going from clinic to clinic to try to get care. By then I was living in Atlanta, where there was a three-year wait for the AIDS Drug Assistance Program. Eventually I was prescribed ARVs, but no one reached out to check on me or help me make my doctor’s appointments. My care was inconsistent and I took my meds inconsistently. I had no place to stay and little to no hope left. I knew that I wanted to live, though, if not for myself, then for my family.
That’s when I decided to become the change I wanted to see in my life. I believed in Maya Angelou’s statement “Nothing will work unless you do,” so I decided to volunteer. I researched and contacted local community-based organizations and AIDS service organizations to inquire about opportunities. I believed that if I could just get my foot in the door, someone would see how badly I wanted to live and connect me with the care I deserved.
I got the opportunity I’d hoped for with the Evolution Project, a center for black gay MSM at AID Atlanta. I knew that if I did a really awesome job and met the executive director, they would have no choice but to connect me to care. Before long, I was asked to join the project’s community advisory board. That’s where I met the director of prevention, several community gatekeepers and Dr. David Malebranche.
By that point I was only 24 but exasperated with the care I was being given. I pleaded to Dr. Malebranche: “I don’t have insurance and I’m receiving crappy care. Can you please connect me with somebody?”
Dr. Malebranche connected me to the nurse-practitioner who would change the trajectory of my HIV experience. The nurse-practitioner actually looked me in the eyes and asked me about myself and the disease—behaviors that a person shouldn’t have to be grateful to experience from a health-care professional, but that I hadn’t experienced before so didn’t take for granted.
The nurse-practitioner also told me that the medication I’d been on for the past six to eight months had given me jaundice; I needed a different regimen. Then he ran a test that showed that I didn’t even have the STD I’d previously been misdiagnosed with. Apparently my previous practitioner hadn’t even bothered to screen me.
My nurse-practitioner actually cared about me. He also possessed a vast knowledge of the disease and a belief in the effectiveness of the HIV/AIDS toolkit. Because of him I am finally connected to and retained in comprehensive care. I have been undetectable for three years now.
Today I work as a program coordinator for the treatment-adherence program at Us Helping Us in Washington, D.C. I also serve on the Metropolitan Washington Regional Ryan White Planning Council. In 2014 I became a brand ambassador for ViiV Healthcare to advocate for those who feel disenfranchised. I strongly believe that my willingness to be public about my status will help other HIV-positive young men recognize their beauty and self-worth and seek the care and treatment they need.
But while I feel excited about my own life, I know that many people have gotten needlessly sick and perhaps even died because they experienced the same lack of care or poor care that I did. That reality really makes me sad. If we want to end the epidemic, we have to do a better job of both educating the HIV workforce and reducing stigma.
From the Black AIDS Institute