My Journey Through Health Care and HIV as a Black American

George M. Johnson
George M. Johnson
Tyson Evans

At the 2017 United States Conference on AIDS (USCA) earlier this month, I was asked to speak at a pre-conference event on the state of health care access in black America. Presented by the Black AIDS Institute (BIA) to launch its new report addressing "the specific and unique impact diminishing or repealing the ACA [Affordable Care Act] would have on black communities," the panel consisted of me; Donna Christensen, a former Congressional delegate from the U.S. Virgin Islands; Phill Wilson, the CEO and president of BAI; and moderator Vann Newkirk, an award-winning journalist at The Atlantic. The discussion weaved through topics ranging from health care access and utilization to racism and environmental justice. For me, the panel was the culmination of my tri-fold existence -- as a human, a worker and an activist -- where the totality of my experience could be shared for common understanding.

The Human

I was first diagnosed with HIV back in November 2010. As someone who didn't have health care and made only $32,000 dollars a year, I was convinced I was not going to see the age of 30. I knew nothing about the virus, the fact that so many were surviving and living a somewhat normal life expectancy or what I would have to endure in terms of treatment and next steps.

As a 25-year-old black man, I feared the health care system -- and with good reason. Health care hasn't always been good to my family on a personal or community level. I knew about the stories of Tuskegee, as it was passed down that we couldn't trust all doctors. I saw the tribulations that my mother and grandmother went through, each battling separate health issues and not always receiving the proper care that they deserved.

This pathology of poor health was passed down to me, and I in turn only accessed health care systems when problems reached an emergency-room level. I had pneumonia for weeks and refused to go until it got to the point where I couldn't breathe. I had chest pains for weeks before I went to a doctor to find out I had high blood pressure and needed to go on medication. And, I put off getting tested when I had been sick going on two years dealing with HIV. As a human, I too well understand the barriers of having access to health care but not being willing to utilize it, giving me insight into what needs to change.

The Worker

By 2015, I decided it was time for a career change, which inevitably moved me into HIV work in the Washington, D.C., area. Starting out as a community health worker in a nonprofit organization, it was my job to find people like "the human" me and help get them established on the health care continuum. I worked my way through the nonprofit until I became manager of testing and counseling and YMSM [young men who have sex with men] services, overseeing most of the agency's clients. This work put me into direct contact with clients who used to be just like me: reluctant to get health care for valid reasons.

Many clients had experienced mistreatment at the hands of doctors and practitioners over the years, which made them jaded about the entire process. As black clients, they often felt and knew that agencies were often only concerned about them as a number for grant purposes instead of really having concern for their well-being. These barriers, which we once shared, now became my job to break. I actively worked as a professional to help others not only gain access to health care but also break the barriers in place that blocked many of them from utilizing the systems that are in place for them. The worker in me gained a newfound respect for the health care community but also recognized the need to make it even better.

The Activist

At the time of my career change into HIV, I became a growing voice in media and journalism and was able to use it as a vehicle to talk about changes needed within black health care, specifically within the field of HIV. As health care has transitioned over the years to become more inclusive of the populations needing to be served, cultural competency has remained lacking across the board. Competency around populations being served is a necessary tool to effectively change the lack of utilization of health care services by the black community.

With the ACA now under attack from the White House, this conversation is even more important as millions (mostly black and brown people) stand to lose the health care coverage we fought so many years to have. The numbers don't lie: African Americans have made historic gains in health care coverage since the ACA was enacted. The threat that Medicaid expansion and marketplace funding could be cut by billions of dollars would hurt the most vulnerable communities, as smaller organizations that do the groundwork would be impacted most. There is still a long way to go, but it is the job of activists, journalists and advocates to continue to push back against an administration that has disregarded the importance of the HIV epidemic.

All together, there is a need for the black community to "unlearn" -- to build new trust around the state of our health care. We have, for so long, been treated as second-class citizens within these systems that we have opted for home remedies and religious protection over the advancements of modern medicine for our potential betterment. This fear of health care systems kept me from utilizing antiretroviral treatment for several years, instead taking a holistic approach that could have potentially been dangerous to my survival. I was able to use an "unlearning" process to trade this approach in for one that challenged the health care industry to treat me better in an effort to fight for the needs of my community.

My health care journey was revelatory, as it showed that the barriers built from a family pathology can in fact be broken down and change a black family dynamic rooted in seeking the help of a doctor only in an emergency. When barriers are finally broken, it is our duty to go back into our communities and get more people to take an active investment in their own health care.

The effort of course, requires the community to grow into accepting health care from where it once was, and the health care system to learn to adapt to the needs of clients and meet them where they are. It requires an attempt to build a community's trust in a system that has oppressed so many for so long.

The state of black health care has made great strides over the past century, yet much of the progress that has been made is in danger if we lose the ACA and get complacent in the fight for a right deserved by all.