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My Journey Through Healthcare and HIV… As A Black Man

At the 2017 United States Conference on AIDS (USCA) this past September, 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 myself; Donna Christensen, a former Congressional delegate from the U.S. Virgin Islands; Phil 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, as a worker, and as 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 healthcare and who made only $32,000 a year, I was convinced I was not going to see the age of 30. I knew nothing about the virus. I knew nothing about the fact that so many people were surviving and living a somewhat normal life expectancy, and neither did I know about what I would have to endure in terms of treatment.

At the time, as a 25-year-old black man, I feared the healthcare system -- and with good reason. Healthcare 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 healthcare systems when problems reached an emergency room level. I had pneumonia for weeks and refused to go to the doctor 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 understood the barriers to having access to healthcare but not being willing to utilize it. And that gave me insight into what needed to change for myself and for my community.

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 healthcare continuum. I worked my way through the nonprofit world 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 healthcare but also break the barriers 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 healthcare community and also recognized the need to make it even better.

The Activist
At the time of my career change into the field of HIV, I became a growing voice in media and journalism and was able to use my influence as a vehicle to talk about changes needed within black healthcare, specifically within the field of HIV. As healthcare 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 healthcare 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 healthcare 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 healthcare. 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 healthcare systems kept me from utilizing HIV 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 healthcare industry to treat me better in an effort to fight for the needs of my community.

My healthcare 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 healthcare.

The effort, of course, requires the community to grow into accepting healthcare from where it once was, and the healthcare 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 healthcare 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.

This story was originally published on on September 20, 2017.