Vignetta Charles, PhD | December 1, 2018
I was sitting on a plane last week thinking about the 30th Anniversary of World AIDS Day. I tried to remember back to the very first one, in 1988. I was a teenager. AIDS was a part of my coming of age.
Some of you might be thinking about how old this means I am. It’s true. I’m old enough to remember when the time from diagnosis to death for my friends and colleagues was incredibly short. I’m old enough to remember how often the treatment seemed worse than the disease itself.
But it means I’m young, too. I am young enough to know that I’m still here for the fight. I’m working on #gettingtozero new HIV diagnoses. I’m planning to see the end of AIDS.
Every World AIDS Day, I take time to reflect and honor my friends who have passed. I say their names out loud. I remember their faces and laughter—and I usually cry tears of sadness.
This year, I did all of those things, including the crying. But I also cried with tears of joy. Because I also started seeing the faces and hearing the laughter of my many, many friends and colleagues who are living with HIV today. Some have lived more than 20 years after diagnosis, and they are thriving in all the ways life has to offer.
Thirty years later. What a time we live in. This “living and thriving with HIV” has become normal for many.
But it is still not normal for everyone. There is more work to be done. Time from diagnosis to death continues to be brief in many places across the globe, including some communities in the United States. Access to life-saving medications is difficult for many. People around the world struggle to obtain medically accurate, non-shaming, and inclusive prevention messages. Many primary care providers have never heard of PrEP, and many more feel uncomfortable discussing HIV prevention or prescribing PrEP.
I’m grateful that my tears of sadness for the 35 million who have passed from AIDS are now mixed with tears of joy for the 40 million living with HIV. I am grateful for the opportunities the world has to offer for long and healthy lives. I celebrate that I get to work at an organization that has been in this fight from the beginning.
ETR published some of the first non-governmental medically accurate information on AIDS, offering pamphlets, articles and even a school-based curriculum as early as 1986. It was a bold step at the time. Many “mainstream” organizations (that is, any group not specifically focused on AIDS) were stepping back. AIDS was seen as a sort of “special interest group” issue that didn’t fit easily into more general missions. Some people actually advised ETR’s leaders to avoid working on AIDS because it might be off-putting to those interested in our other areas of focus.
I am grateful that our leaders chose instead to step forward. The work continues to this day. We have inspired staff who bring vision and innovation to work with communities around the country and internationally. We bring heartfelt celebration to long lives well-lived. And we will still be here tomorrow, and next week, and next year—as long as necessary, until the end of AIDS.
Vignetta Charles, PhD, is CEO of ETR. She can be reached at firstname.lastname@example.org.