Every day, we are faced with an onslaught of information about COVID-19. Some of it is mixed messages, some of it is data showing that the outbreak is spreading even further. It’s not hard to see from people’s responses that this overload has left many people feeling anxious and panicked. After all, how do you know what information is correct about a virus that was unknown to humans just months ago? It is hard to keep up, and the threat of the “unknown”—or uncertainty about a current situation—can cause anxiety and a sense of not knowing how to prepare for the future. This virus-related anxiety, however, is not new. For many AIDS activists, they’ve seen this anxiety before—and we should look to them for ways on how to mitigate both internal and external panic.
This is not to say the trajectories of both viruses are the same. In fact, they are very different, as noted by Mark Harrington, alumnus of the AIDS activist group ACT UP and executive director of Treatment Action Group.
“Throughout the ’80s and ’90s, there was a scarcity of information [related to AIDS]; all [we know about COVID-19] has changed in warp speed.”
It took decades to learn what we currently know about HIV. In contrast, scientists understood the coronavirus’ sequence and its means of transmission within a few weeks. Implementing public health interventions to stop its spread happened within a few months—maybe a bit late, but better than what has come before. This is in contrast to how difficult it was to capture the public’s attention during the early years of the AIDS epidemic, as it was affecting primarily stigmatized populations.
Even though HIV and the novel coronavirus are vastly different in their structure, how they are transmitted, and how they affect a person’s body, one thing they have in common, according to Harrington, is a slow governmental response. “Bad presidential leadership and incompetent communication are hallmarks of both epidemics.”
With the current uncertainty and government incompetence in response to a public health crisis, we can look to the AIDS activist movement to inform our next moves. “[W]e already have a very large network of experienced activists, public health professionals, [infectious disease] doctors, and [community-based organizations]” in existence, a network that originated in response to HIV,” says Harrington. “Now, we are able to mobilize faster.”
This mobilization has already started, in fact. On March 9, a working group of mostly New York City–based researchers, public health practitioners, community leaders, and activists (including Harrington and other ACT UP alumni) sent a letter to city officials expressing concerns with the city’s COVID-19 efforts at that time and demanding measures for ensuring public safety, such as not releasing personally identifiable information of those who have contracted the coronavirus. Like with ACT UP, the group hopes to utilize one another’s expertise to create structures to respond to this quickly moving crisis.
ACT UP can also demonstrate the ways in which community members can care for each other in times of public health epidemics. “Supporting each other in the way we did in the … support groups in the ’80s and ’90s is important,” according to Harrington. This emphasis on support is echoed by Steven Thrasher, HIV/AIDS scholar and assistant professor of journalism at Northwestern University. He says that we should demonstrate that same community mindset today.
“[HIV and the coronavirus] behave differently. We cannot behave in the same physical ways, and yet, the concepts of mutual care can really inform what we do,” he says. His recommendations? Not completely isolating ourselves. Social distancing, as recommended by the Centers for Disease Control and Prevention (CDC), is key in driving down rates of transmission and not overburdening our health care system. But that does not mean we can’t check in on our neighbors or friends. “Find out who is most vulnerable, and take medical supplies and food to them. We can never socially isolate. We need each other to survive.”
Harrington mentions that another way we can all support each other is through sharing COVID-19–related information in language that is accessible, a lesson also learned from years of AIDS activism. He has seen his ACT UP colleagues and friends proactively share information online that can be more easily understood by the general public. Organizations such as the CDC are reliable sources, but not everyone has the same level of health literacy. Keeping information in “science-ese,” as he calls it, will not mitigate panic. Instead, it is important to have community-appropriate, destigmatizing resources and materials that allow all people to understand the situation at hand.
Perhaps the biggest takeaway from both Harrington and Thrasher is the need to protect our most vulnerable. Many American workers do not have health insurance or cannot afford to miss work, meaning they would not be able to get care for COVID-19 if they needed it. Thrasher mentions how ACT UP’s members understood the big structural issues that led to AIDS disproportionately impacting certain communities; as a result, they advocated for policies such as health care for all. While a plan like Medicare for All won’t contain the coronavirus in the United States, Thrasher believes policies such as paid sick leave are still crucial and worth fighting for. “To honor ACT UP’s legacy, it would behoove us to raise hell in some way.”