COVID-19 is the second pandemic that I’ve lived through, and I’m only 58 years old. Ever since I was diagnosed with HIV in 1982, I’ve been an HIV activist. When COVID-19 emerged last year, my advocacy—like that of many others—switched gears, and all the energy I had spent decades devoting to HIV was poured into stopping this new virus.
It hasn’t been easy. When we went into global lockdown, it brought me back to the early days of HIV, when everything was unknown. Back before it even had the name HIV. Back to the days when our friends were dying in unfathomable numbers. It’s hard to even describe how retraumatized so many of us HIV long-term survivors have been during this time.
Being able to contribute has made a huge difference for me. As an HIV treatment activist, I learned how to interpret complex scientific data and translate it into language that could be understood by people for whom science isn’t a second language. As the chair of the AIDS Clinical Trial Group’s (ACTG) Global Community Advisory Board (GCAB), I help lead efforts to support community outreach, education and participation in clinical research and represent community concerns in the ACTG. From that work and my other advocacy efforts, I know how to collect the diverse perspectives of the HIV community on a broad range of topics and share them with clinical trial teams. My many years of HIV advocacy work allowed me to hit the ground running when COVID-19 appeared and to apply these skills to its many unknowns.
We have learned so much from those difficult early days of HIV, and those lessons let us skip ahead a little with COVID-19. We knew how vital communication was when it came to complex science and medicine and how careful we would need to be with public health messaging. We also knew that we would need to develop a suite of approaches to battle COVID-19, including testing, vaccines and treatments.
I’ve never been as impressed by science and scientists as I have been in the past months. Highly effective vaccines (more effective than we dared hope for) were developed through groundbreaking collaboration. And we’re making great progress on getting people vaccinated. But because not everyone will be able or willing to get a vaccine, we still need treatments to care for those who get COVID-19.
One of my new roles in the COVID-19 era is as a member of the GCAB, through which I advise on ACTIV-2, an ACTG clinical trial that aims to study different treatments for people who have COVID-19 but aren’t sick enough to be hospitalized. The ACTG built upon its decades of experience and wisdom as the oldest and largest HIV clinical trial network in the world to develop an adaptive study protocol. This allows researchers to study numerous potential treatments for early COVID-19, all within one trial. ACTIV-2 is currently looking at different ways to provide treatment, including infusions, a shot, an inhalant and pills.
One of my goals as an ACTIV-2 GCAB member is to encourage diverse participation in the study. Mistrust of the medical system and of clinical trials in particular is certainly understandable given historical events. But COVID-19 has impacted communities of color at rates that are astronomically higher than those of white communities, and we need to ensure that these treatments work for the populations most affected. Participating in ACTIV-2, or another COVID-19 clinical trial, is an incredible way to contribute to the fight against this virus. If you’re interested in learning more about ACTIV-2, you can visit the trial website, www.ACTIV-2.org for more information.
While more than half a million people have died of COVID-19 in the United States alone, millions more have been left behind to mourn them. The parallels to the HIV pandemic have sometimes felt like too much to bear. However, I am grateful to be able to apply so many of those painful lessons from my past to help diminish the impact of this new pandemic. I am hopeful, too, that the unprecedented success of the COVID-19 response will translate into new advances for HIV. I am grateful to contribute, and I hope you will consider doing so too.