On Nov. 29, 2016, several activists, leaders, and professionals in the field were invited to the White House to attend the final World AIDS Day event under the Obama Administration.
The energy of the room shifted multiple times throughout the conversation from one of grief, pain, and sorrow to one of empowerment, joy, and a renewed vigor to continue the fight that started over 30 years ago, to rid the world of having HIV.
It was very interesting, though, in the sense that there were certain words that many wouldn’t utter. Donald Trump, Mike Pence, and a word that we in the field need to finally put to rest: AIDS.
Like the NAACP and many others tried to do with the “N-Word,” there’s a need for our community to end the acronym known as AIDS, which stands for “Acquired Immune Deficiency Syndrome.”
The HIV virus attacks the immune system by taking over cells from the part of the body that helps fight off germs, bacteria, and infections. Once the body’s immune system is damaged to a certain level in conjunction with an opportunistic infection, a doctor may give a patient an AIDS diagnosis.
During the ’80s and the ’90s at the height of the epidemic, the AIDS diagnosis meant that it was the beginning of the end for most. However, with advancement in modern medicine, HIV is now a treatable, often classified as “chronic,” condition that people can live with and even have an adequate quality of life.
The problem in our society is that many people use the terms HIV and AIDS as if they are interchangeable, which couldn’t be more wrong.
HIV is a virus that can lead to a diagnosis of AIDS. But what many don’t know is that once a person has an AIDS diagnosis, they can never go back to being classified as just having HIV, even if their numbers from their viral load and t-cell count leave the range required to give an AIDS diagnosis. For that reason, you will see HIV/AIDS and “HIV and AIDS” used as the measure without a separate distinction between the two.
This causes the need to have a conversation around changing the language we use in reports and in the community in an effort to de-stigmatize the virus and more effectively explain the current state of the epidemic.
I often think about how cancer moves through stages when discussing why AIDS is an outdated term needing to be abolished. Cancer has Stage 1 through Stage 4, with varying levels to determine what stage a person is in. Based on those stages, treatment options are made available to patients with the goal of sending a person into cancer remission.
When a person with cancer moves from the stages to a determination of “terminal,” we know that it is in the final stages before death. AIDS used to be the term comparable to “terminal” but is no longer that way thanks to modern treatment and prevention advancements.
Even when a person passes away, it is deemed as from “HIV related complications,” not AIDS. HIV has more definable stages, with the highest stage being either “4” or “advanced.” When a person is getting treatment and their levels are getting better, they can move down the stages, with the goal of becoming “undetectable.”
Not only is this empowering but it gives a person context as to how the virus is affecting their body and whether or not the medication is working for them. It helps a person to become invested in their health care and better health outcomes with the use of a measurable tool in their own treatment.
I think of my own story and where I would be if my doctor during my appointment gave me an AIDS diagnosis rather than giving me the HIV diagnosis. My numbers at the time on several of the metrics used were in the range of an AIDS diagnosis. I’ll never forget when the counselor told me, “I refuse to give someone an AIDS diagnosis that I know is going to succeed on medication.” It was the catalyst for me to start eating better, working out, and taking care of my health to ensure that my levels and numbers got better.
At 25, had I been given an AIDS diagnosis, I would have given up. Not being properly educated on the difference between HIV and AIDS, I just knew that AIDS meant death. Six years later, as a vocal HIV educator and activist in the community, I am still fighting this very same fight.
People throughout the world who lack resources and education have no compass for the terminology and use it in a way that is still very stigmatizing to those living and working in the field. I’ve heard the building I work in called the “AIDS” building and numerous people in the community come in and ask for an “AIDS” test.
As the virus and landscape of treatment, prevention, and adherence changes, we also need to make sure the language changes with it. AIDS has caused us to bury so many in the world over the past 30 years, and we must continue to fight, as we are still losing people to the virus daily.
It’s time to take power back from the word that took so many of our ancestors and bury it, while we continue to fight for a world free of HIV.
George M. Johnson is a journalist and activist based in the Washington, D.C. area. He has written for EBONY.com, TheGrio, JET, Pride.com, Thebody.com, and The Huffington Post on topics of health, race, gender, sex, and education. Follow him on Twitter: @iamgmjohnson.