In less than two years, the COVID-19 pandemic has killed more Americans than have died from HIV/AIDS since the AIDS epidemic emerged 40 years ago.
Data from the Centers for Disease Control and Prevention (CDC) indicate that more than 700,00 Americans have been lost to HIV/AIDS as of 2019, the last full year for which this data is available. COVID has killed 750,000. HIV/AIDS deaths in this country are averaging about 6,000 each year, while COVID is killing more than 6,000 every week.
Today, The Baltimore Sun published my editorial on the topic, in which I unpack the confusing emotions this grim milestone has brought up for me.
From my editorial:
Activism is a selfish business. It has to be. For 35 years I have been laser focused on convincing people of the threat of HIV while promoting compassion for those living with the virus. Only with the deadliest years of AIDS in the rear-view mirror, and with COVID figures surging higher each day, am I reminded that it isn’t always about me and the disease that changed my life.
I’ll go a step further. HIV activists got used to commanding the world’s attention, once upon a time. As much as we hated the numbers game of pitting one disease against another — which was the leading killer in what age group, how many research dollars vs. cases, that sort of thing — it was easier for us to be generous when AIDS was sprinting up the epidemiological Billboard charts with a bullet.
The competitive, less humanistic part of me is more flummoxed than heartbroken by the new COVID numbers. We’ve been throwing our grief and our bodies into the issue of AIDS for our whole lives, and now, some new virus wipes out our death toll in less than two years?
I had a more thoughtful approach in my editorial, because it’s the right state of mind at a time like this:
Still, this new COVID milestone also presents a collaborative opportunity. Just as people living with HIV have built powerful coalitions like the U.S. People Living with HIV Caucus, coronavirus patient-centered groups, like the Long COVID Alliance, have been formed recently to address their medical, social and policy needs. People living with HIV have a great deal of institutional wisdom in that regard to share with them.
I’m not the first to connect HIV/AIDS advocates to the growing population of those dealing with Long COVID. Activist and HIV ally JD Davids, for instance, has been giving this issue a lot of thought. In an essay that appeared on POZ.com back in June 2021, “The HIV Movement Must Come Through,” JD outlines the parallels between COVID and other chronic conditions from which he suffers and the challenges ahead for people dealing with long-term effects of the new virus.
JD writes:
Long COVID was predicted by disabled people and people with chronic illnesses. But we were talked about, not listened to, as the pandemic approached and began to spiral out of control. That’s because while COVID-19 is indeed a new disease, it’s been known for over 100 years that people can become chronically ill after a viral infection.
But when we have post-viral conditions, like ME or long COVID, we still struggle to be believed. We scramble to find care providers who can help. We suffer the consequences of systems that split us up by medical specialties rather than our actual needs as humans. And unless there’s an expensive treatment for us, we don’t see the kind of in-depth consumer health information or support underwritten by drug company advertising.
More importantly, while I simply bring up these issues in a general way in my editorial, JD Davids offers concrete ways to “be a good ally to people with Long COVID.”
Believe the people in your life who are still sick months after they had COVID—even if they didn’t know they had it. Help them find support (such as online support groups like Body Politic) and help them #StopPaceRest.
Bring long COVID into the conversation about COVID-19, which still is reduced to focusing on acute COVID and viewing vaccines as the solution.
Fight for equity-based public health and medical care for all people with long COVID, HIV, ME and all other chronic conditions (learn more at bit.ly/chronicinjustice).
Speak out or stand up for long COVID and ME care for all, regardless of proof of a positive COVID test (bit.ly/covidtestjustice).
Bridge the gap between HIV advocacy and disability justice to combat the stigma against all of us (start with watching Crip Camp and learn from the Disability Visibility Project.
I learned a long time ago that the best thing I can do with my tragic history is use it to better understand and help people unlike myself. In doing that, I take my grief and my trauma and I turn it into a tool for positive change.
JD Davids has offered us a roadmap to help those dealing with Long COVID and other chronic conditions. Check out his work at The Cranky Queer or one of the Long COVID resources mentioned above.
Thanks for reading, my friends, and please be well.
Mark
