My Open Letter to Doctors About How to Treat Black and Latinx HIV Patients

“INFECTIOUS DISEASE CLINIC”

The words screamed at me in bold and in all black caps. It was the first sign I saw as I approached the double doors for my first doctor’s appointment. I stood there for a second, wanting to cry and run away—not knowing what to expect on the other side. I wondered who I might see in the waiting room or, better yet, who might see me. I took a deep breath and walked inside.

I sat in the waiting room, extremely nervous. Looking at the all the people in the area. Some who looked like me. Some who didn’t. It was a clinical setting, full of magazines and literature that spoke to nothing about who I was or who the majority of the clientele in the room were. I got called to go back and draw my blood. When the nurse stuck the needle in, I began crying. She was a black woman, one of the only ones in that place. She comforted me, said the serenity prayer out loud, and told me I would be okay.

I then went in to meet my new doctor, a very old white woman who seemed to be hip to “the culture.” She complimented me on my tattoos and then went straight into talking about the virus. My T cell count was 197, which, according to her poster on the wall, meant I had AIDS. I asked her, but she assured me that I didn’t have the advanced form of HIV, and that my viral load was too low to be deemed as such. Then I asked, “what is a viral load?” as she continued to speak to me as if I knew what she was talking about. She wrote me two prescriptions that day, and told me I needed to come back in two weeks.

I never returned.

That early experience, in 2010 when I was 25, came flooding back to me when I read a release about research published in the Lancet last week. It said that worldwide, 44 percent of all new HIV infections “occurred in people from marginalized groups (such as gay and bisexual men, people who inject drugs, sex workers, transgender people, and the sex partners of people in these groups), and health systems struggle to reach and engage these groups.”

They struggle, largely because the medical community needs to rethink how they treat people with HIV and AIDs—especially people who are at high risk. We continue to see a chasm between patients from marginalized communities and those who are responsible for our treatment and long-term care. With everything from the daunting signage to doctors' inaccurate presumptions, there are concrete reasons why the HIV healthcare system is losing marginalized patients. With some minor adjustments, healthcare professionals can better serve these communities which continue to contract HIV at higher rates, in effort to complete the task of ending virus transmission by 2030.

From my experience, here’s what needs to be addressed:

Seeing "Infectious Disease Clinic" almost stopped me from walking into the room. I’m sure it stopped others from ever setting foot in there at all. Many clinics continue using this language, which can be scary to a person who is first diagnosed, especially those from marginalized or educationally underserved communities who may not fully grasp understand what that even means.

People of color with HIV continue to struggle with stigma which is partially furthered by the language used when describing treatment facilities. So words such as “infectious disease” can be triggering to newly diagnosed patients—they may as well read “exile yourself and die alone because you’re infected.” Seeking and continuing treatment for HIV must include feeling like you’re still a valued member of society, so rethinking how to refer to the virus in clinical settings is crucial.

More from Tonic:

It may sound simple, but I can't tell you how many offices I've been in with primarily black and brown clientele inundated with images and brochures (and workers, but that’s a whole other thing) that don't represent us, physically. It's an automatic feeling of judgement. It makes you feel like an outsider in a place that should be all about you and your care. People feel more comfortable in places that speak to their culture. If your base clientele is black and brown, have images and even language that speaks to those communities—this may require having Spanish translators or bilingual literature and staffing.

The biggest mistake most doctors make is assuming that people coming to see them for the first time know the basics of HIV. As a former director of testing and counseling, I have had clients discuss HIV and AIDS as interchangeable terms. I have also seen people lack even a basic understanding of how the virus is transmitted. Doctors should start with the basic question of “What do you know about HIV?” and building their patients’ knowledge up if necessary. When discussing lab work, don’t just go over the numbers. Ask your patient if they’re familiar with what the numbers mean. Building awareness in people with HIV or AIDS can only help with their treatment when they’re not in the office.

There's an assumption that because black Americans (especially men who sleep with men, and black women) have the highest infection rates that we are prone to be more sexually deviant or less responsible about protection. The conversation often gravitates to our condom usage despite evidence that says we are more likely than most groups to use condoms. Doctors rarely talk about a more accurate reason the epidemic stays in our community (and why STIs in general run high): HIV rates are higher in our community to begin with and we are more prone to sleep with people within our own race, and many of us having similar sexual circles. Also, we have fewer healthcare resources in our neighborhoods. Conversations should be constructive, not judgmental, period.

Unfortunately, much of the medical community considers being "in care" to mean being on antiretroviral therapy or PrEP and coming to your quarterly appointment. Doctors are quick to run through your labs, make sure your numbers are good, and send you on your way. They don't ask, in my experience, "what is your current living situation like?" or "Did you eat today?" How can a patient actually be cared for if the doctor misses out on the intersections of social determinants of health in marginalized communities? When we talk about problems around access to care, utilization, and treatment adherence, it is the issues that fall outside of getting your prescription and taking your pill daily that affect people with HIV the most.

I personally stayed on a medication that made me physically sick for three years simply because I thought that was what was necessary for me to stay alive. One day, I finally told my doctor about my stomach aches and she looked at me and said, "Why didn't you say something? We can switch the medication." I thought to myself, "Why did you never check with me?” I didn’t know how I was supposed to feel. Since that time, I've helped so many friends and clients change medications, challenge their doctors when necessary, and be their own advocates.

We're often treated like numbers in a system, and doctors can become numb to the fact that we are actual people who may not have the full understanding of a medication. It’s important that doctors be proactive in probing about side effects rather than reactive when clients finally speak up. Doctors are often viewed as some of the smartest people in the world. It can be intimidating to ask questions, especially for marginalized folk who don’t carry white privilege. There’s that inherent fear of “questioning” the expert, so clinicians have to make sure the patient feels comfortable enough to have those discussions.

Doctors have to find a way to find mobility for their services, and they can't do that in an office all day. Some people really can't get to them. So mobile clinic days are so important for marginalized communities, being a consistent presence for people's health. Also, there is still a lot of medical mistrust in marginalized communities. People of color who do have access and resources to clinics and hospitals may never utilize them because of a generational passing down of this medical mistrust. Healthcare must work to rebuild the broken bonds of community within its system. That will require the work of meeting people where they are, rather than trying to catch them where they are at.

George M. Johnson is an HIV advocate whose upcoming YA memoir deals with blackness, queerness, and navigating life at its intersection.

Sign up for our newsletter to get the best of Tonic delivered to your inbox.