This World AIDS Day comes at a time of unprecedented attacks on populations vulnerable to HIV and threats to federal HIV programs, leaving the resilient HIV community to turn to new strategies to raise awareness on a larger scale about what’s at stake. Recent examples include the Save HIV Funding campaign’s #CutsKill Quilt, which has been displayed on the U.S. Capitol grounds and in communities across the country to illustrate the human impacts of federal funding cuts, and the “24 Hours to Save AIDS Research” livestream event organized by HIV researchers and advocates to communicate the value of HIV research.
The attacks and threats also are inspiring some to share what they witnessed as early responders to one of the world’s deadliest epidemics and their fears for what may come next. Past HIVMA Board member J. Kevin Carmichael, MD, FIDSA, and his colleague and friend Scott Blades recently recorded a StoryCorps conversation to contribute to the oral history of the remarkable evolution of the HIV response over the past four decades.
HIVMA’s executive director, Andrea Weddle, MSW, caught up with Dr. Carmichael to learn more about his story and his decision to document it now.
What motivated you to document your experience as an HIV provider over the last four decades?
I am semiretired now, and perhaps a little distance from the work has allowed me a clearer perspective and some time to reflect. I am very grateful for the ability to have done the work of HIV care but am also beginning to appreciate the depth of my own trauma and grief. Early in my career, I wrote several stories about my experience and my patients. I thought of them as HIV lessons. Now doing academic detailing focused on sexual health in Arizona and working with young medical providers, I realized that the late ’80s and early ’90s are ancient history to them, as they were very young or not even yet born in 1995, which was the darkest year of my practice.
Your story on the evolution of the epidemic was powerful — from the 1990s before treatment was available and too many of your patients died young, to now where, with HIV treatment, people with HIV have a life expectancy approaching those of people without HIV. What was it like for you to share the remarkable progress you witnessed given the unprecedented threats to the HIV response?
I developed a lecture about the history of HIV and have given it alone and also with friends who are living with HIV. The story of HIV is the greatest medical success story of our time from a scientific, a political and a societal perspective. The story of HIV in each of those spheres is alone epic, but the sum speaks to the human capacity for great achievement. When I give that presentation, it is very hard to get through it without tears ... generally in the early days when I lost friends and patients. Increasingly, I have trouble at the end looking at the work we still need to do, the prospect that further progress may be unlikely and that we will have to work very hard just to preserve where we are today.
I sometimes imagine a world where so many of my friends might be here now growing old with me. I imagine the excitement of activists I worked with would have at seeing an end to HIV nearly in our grasp. But then I see the proposals to cut funds for HIV care, prevention and education, to destroy what so many have helped build. I think that compels me to try to share the history and to help us learn from it.
Why is it important to document the history of HIV? What guidance do you have for others involved in the HIV movement who are considering documenting their stories?
I have two thoughts. Those who do not learn from history are doomed to repeat it. It is remarkable looking back at the similarities between the early days of HIV and recent experience with the COVID-19 pandemic.
It has also been said one death is a tragedy, but a million deaths are a statistic.
We also need to document the history of HIV in order to learn from it — both the good and the bad. I encourage us to share our own individual stories about our friends, our colleagues and our patients so that they are seen for the triumph and the tragedy they are and not simply lost as a statistic.
Help create an oral history of the catalytic achievement of people living with HIV, activists, researchers, clinicians, caregivers and allies by documenting your experience as an HIV clinician, researcher and/or advocate through StoryCorps or another platform.