I have been without HIV meds for almost a month now.
I have a six-month prescription floating out in the galaxy somewhere. But I no longer live in Boston, where my meds were prescribed. I moved back to Atlanta because I prefer to live here, but getting care has turned out a disaster.
It's not as if I didn't prepare for the move. I reached out to contacts and peers in Atlanta long before I decided to return. Coming from Boston -- a place that insured me and provided me with a list of culturally competent medical providers in a matter of two hours, plus a same-day appointment -- I knew returning to Atlanta would be its own vortex. And after reading Michael Lamb's testimonial recently published with TheBody, it felt great knowing that I'm not the only informed individual experiencing lack of access to care.
I've spent the past decade navigating systems in rural New York state, Atlanta, and Boston. Despite the research that shows people who are newly diagnosed should start antiretroviral therapy as soon as they're diagnosed, and people who have access to care should not stop and start treatment for fear of developing resistance to their current meds, our health care systems are very different from city to city, state to state, and depending on whether you're urban or rural.
When I was diagnosed in 2010, recently graduated from college and living in a rural town in New York State, I experienced some of the worst case management of all time. I was informed enough to know that being diagnosed and living in New York State had its advantages in comparison to many parts of the country. It's true. I was "connected" to care rather quickly. However, my first case manager in New York told me that in order for me to receive care, I had to become homeless. He advised that I leave my mother's home and move into a shelter for a minimum of seven days so I could be declared legally homeless. I inquired about where I should go after those seven days. I learned I'd be there indefinitely.
How do you tell someone that they have to become homeless in order to receive care? To this day, I'm confused. Needless to say, staying there didn't help. In 2012, I relocated to Atlanta because -- at the time -- my youth and delusions convinced me I would thrive in Atlanta. So I hopped on the Greyhound and endured the two-day bus ride down South.
Once in Atlanta, it took me four months to see an infectious disease specialist. Though it took me forever to see a doctor, I was connected to the Evolution Center at the time. I engaged in short-term mental health therapy, which was the best thing for me. I knew that keeping my mind right would keep my viral load down and my CD4 count high. It was true -- for me. While residing in central New York, I came dangerously close to an AIDS diagnosis. Though I wasn't on meds while living in Atlanta, my CD4 count rose and my viral load remained pretty low. I wasn't undetectable, but I wasn't in jeopardy of falling into the abyss of AIDS. The Evolution Project helped keep me alive.
But I left Atlanta for Boston, originally to teach middle school, then worked for an organization that specializes in LGBT and HIV health. Though I found Boston not an ideal place for me as a black gay man, I did have access to care and remained undetectable during my five years there. I needed to return to Atlanta for what I thought would be my mental health and wellbeing. But you can't have peace of mind when you have to fight to get access to health care.
I returned to Atlanta in March 2019, three years after the Centers for Disease Control and Prevention (CDC) concluded that if current trends continue, one in two black men who have sex with men are projected to be diagnosed with HIV in their lifetime. And despite this being the home of the CDC, it's clear to me that the system of care here feels no urgency around my survival -- why else would I still be without medication and a doctor?
I've gotten very little in terms of support or connection to care. I've been given a list of resources and people to follow up with. I called one major AIDS service organization for care. They are unavailable to even do an intake until July. I've called the number I have for the Ryan White program with Fulton County's Department of Public Health. The line is not working, and after leaving a slew of voicemails, I know firsthand they are not honoring their 48-hour callback window.
I've learned one thing since my return. This city still ain't sh*t. My advice for those of us living with HIV who have aspirations of living here: Make sure you still can travel to and from your present pharmacy.
That isn't to say there aren't people here doing the best they can. Black gay men, seeing the gaps in services, have begun to start new organizations since I last lived here. Daniel Driffin, Larry Walker, and Dwain Bridges started Thrive SS. Kendall Boone gave birth to He Is Valuable, Inc. Great black folk doing phenomenal work to counter the CDC's projections that half of black gay men will develop HIV in their lifetime. And they're doing this work with minimal support.
They still have maximum impact.
Fortunately, my work brings me back to Boston often enough to not only see my medical provider, but I can pick up my meds -- minutes after that appointment. But that is still not enough, because I haven't been able to get back to Boston to get a new supply, and I won't be able to before I'm able to see a doc here in Atlanta in July.
I have been without HIV meds for three weeks now.
This is America.