HIV was the first disease to fight for it’s civil rights. Prior to that time, the prevailing thought was that diseases do not discriminate and that care was based on a medical model.
HIV changed everything. Doctors were no longer infallible, patients had a right to understand and learn about different treatment options, and could now be active participants in the decisions that impacted their lives. The concept that a disease had civil rights was difficult for many to understand.
Historically, civil rights are the rights of individuals to receive equal treatment (and to be free from discrimination) in a number of settings, including health, education, employment, housing, and more.
The Civil Rights Movement started within the African American community, but has expanded to include equality for all people regardless of their race, sex, gender expression, age, disability, religion, sexual orientation, or national origin. The HIV community fought to be part of the civil rights movement. Having the virus was used as justification to deny healthcare, housing, and jobs. For the first time, a communicable disease asked to be part of this larger social context.
Our country remembered a great man who changed the course of history. Today let’s remember the woman alongside the man, Mrs. Coretta Scott King. Her important work to advance civil rights is undeniable, but she should also be remembered for her work in the fight against HIV/AIDS.
The first time I met Mrs. King, my hands were shaking. I had just lost a good friend and was feeling overwhelmed by an epidemic that was killing my community. As I went to shake her hand, she saw that I was upset and moved to give me a hug. When she put her arms around me, I started to cry. It was just too much, I could not stop the tears. As she held me, she whispered into my ear “it’s going to be OK, you are carrying on his dream.” I remember her words like it was yesterday. The peace I felt when she held me would carry me though many a dark time in the epidemic.
Mrs. King gave a keynote addresses at the National Skills Building Conference (known today as the United States Conference on AIDS) and the HIV Prevention Leadership Summit. As only she could do, Mrs. King said, “the fight against HIV is a fight for the civil rights of people living with HIV.” She drew a direct link between movements at a time when few wanted to be part of our struggle. She would get significant push back for her stance, but she never wavered in her support of our community. Against the wishes of many in the civil rights community, she opened the door for our movement to be part of a larger struggle.
Today HIV is at a crossroads. Many people living with virus now live long lives. Medications have given back what the disease took away. Unfortunately, that isn’t true in all communities. The Centers for Disease Control noted that across racial and ethnic groups, 79.5% of white Americans living with HIV had some viral suppression while only 64.1% of African Americans living with HIV had some viral suppression. African Americans who were diagnosed with HIV are the least likely to be linked to HIV medical care. We’ve heard these statistics before, but we’ve almost become numb to the numbers.
Our movement is made up of good people who overwhelmingly do not discriminate, yet health outcomes tell a different picture. Race has become a defining characteristic in America’s attempt to end the HIV epidemic. Many years ago, the HIV community asked to be part of the civil rights community. Our community demanded equal treatment regardless of HIV status. Now it’s time for the civil rights community to ask for racial justice within the HIV movement. The color of your skin should not determine your risk for HIV infection. All people living with HIV deserve access to quality healthcare and the medications that can prolong their lives.
The National Minority AIDS Council (NMAC) builds leadership within communities of color to end the HIV/AIDS epidemic. Since 1987, NMAC has advanced this mission through a variety of programs and services, including: a public policy education program, national and regional training conferences, a treatment and research program, numerous publications and a website: http://www.nmac.org/.