June 5th is Long-Term Survivors Day and marks the 40th year when the world heard of the first cases of HIV/AIDS in the United States in 1981.
Earliest possible cases of HIV/AIDS
After doing some research off and on for years, it said that the AIDS epidemic started in the 1920s in a city called Kinshasa in what is now known as the Democratic Republic of Congo.1 I have learned that one of the earliest known cases was in 1959 in Manchester, England, in a young white man who was 25 years old.2
Researchers have also connected another case to AIDS from 1969 in Saint Louis; this case back then was a medical mystery. The young boy was a Black male teenager (15 years old) when he first came in with symptoms. He then passed away at the age of 16 years old.3
How things were going in the United States
By the 1980s here in the U.S., it was reported that 5 white gay men who had been healthy were now being diagnosed with pneumocystis carinii pneumonia (PCP) and had a current or previous case of cytomegalovirus (CMV).4
The name was then changed to GRID (gay-related immune deficiency). They called it the "gay plague" and other stigmatizing names as well. When 1982-1983 hit, infants and women were being diagnosed too. From 1981 to 1995, the deaths went from 451 to 50,628.5
State of the HIV epidemic today
Today, 38 million people globally are living with HIV/AIDS and, in 2019, 1.7 million people were newly diagnosed. Since the start of the HIV epidemic, it is estimated that between 32 and 35 million people have passed away.6,7
The strength of long-term survivors
How did this get out of hand? We are still living it today after 40 plus years? Every time I go back to read the statistics, I feel overwhelmed with sadness and would have never thought that I would be living with HIV; it is kind of funny, in a way, to me.
I have connected with some amazing long-term survivor warriors who continue to thrive and fight for all of us until the transmissions die down. So many lives gone, so many tears and they all keep going. I now understand why we all must rally till the end and long-term survivors have given other advocates the strength and power to do so.
We face a lot of barriers: how HIV disproportionately affects certain communities, access to care, homophobia, stigma, policy changes, criminalization along with systematic racism. But our actions and what we all believe in will bind us together in some kind of way forever.
The fight will never stop
One life-changing thing that has happened for people living with HIV since the epidemic started is the scientific research of undetectable equals untransmittable (U=U). and being a life-changer takes for all of us to spread this message as far as we can because this is part of the change.
We say HIV/AIDS has changed. Yes, it has, but the fight for change has not stopped and will never stop. The Centers for Disease Control and Prevention (CDC) states that if treatment was prioritized (linking people who are diagnosed with HIV to care, making sure that they receive treatment, and getting them to attain viral suppression), new HIV diagnoses could be reduced by 94 percent in the United States by 2030.8
How often does someone offer you unsolicited advice on your health?