1980s AIDS outbreak: Lessons for coronavirus

What can the AIDS crisis of the 1980s tell us about coronavirus and how to handle it? Masha Gessen covered this for the New Yorker. 

“What I was thinking about is that there's a moment when it ends and … the AIDS crisis ended in the sense that AIDS stopped being an automatic death sentence for most people,” Gessen says. “And when it stopped, we went into the state of valorizing the heroes that fought the epidemic. … But sometimes it comes at the expense of talking about what created the need for people to be heroes. The reason we have heroes was because the government failed us.”

KCRW: A lot of people say crises bring us together, people become volunteers and rise to the occasion. Meanwhile, we’re seeing a lot of profiteering (overcharging for medical masks), the president and others calling COVID-19 the “Chinese virus,” and Asian Americans facing prejudice. Do you see these kinds of parallels with the AIDS crisis in the early days? 

“Of course. And it was seen as this disease of the other. There was a lot of fighting to get people to see beyond that. And it was very necessary to communicate that it affects everybody. I find that actually [is] a hugely problematic way of thinking about a disease.

Why should a disease affect everybody for everybody to care about it? And that goes to something that is very ingrained in our culture, where we're always thinking and talking about us and the other.  

And in the case of the coronavirus, people think of it still as the disease of other people. They think of it as the disease of New Yorkers … of people from other countries.” 

With the AIDS crisis, for things to return to the way they were, it took lots of time and the development of effective drug treatments. Will this be the case with coronavirus? Also, will certain aspects of life be changed permanently? 

“What I see here is that we will try to make things go back to normal, despite what we have seen exposed as a result of this pandemic. 

What we have seen exposed as a result of this pandemic is how dangerous our health care system is because it is a business. Every decision is driven by business logic. Even if it's a nonprofit hospital, even if it's a community nonprofit, it still has a bottom line. It still is dependent on its financial flow. It still is dependent on the health insurance companies paying its claims. 

And if we go back to ‘normal’ without talking about that right now, we're just going to be stuck with more of that, and the normal will actually be worse than the ‘normal’ that we went into the pandemic with. 

And so what we really need to be doing — and this is the most difficult thing to do in a crisis — is to kind of zoom out from the crisis. And say, ‘What needs to be changed structurally?’ And that is the opposite of crisis thinking because in crises, we generally tend to respond immediately and think we'll leave the big decisions for later. But we can't afford to do that. We can't afford to leave the big decisions for later.” 

Did something good emerge from the AIDS crisis that changed how we operate, and that could point us in another direction with COVID-19? 

“One good thing that came out of the AIDS crisis was a change in the way that … a lot of people … think about medicine and the way that doctors and patients communicate. 

I think that the word empowerment was very important in the AIDS activist movement. … This was before the internet, but people educated themselves. And people became their own medical advocates. 

This is something that we practically take for granted now — that patients and doctors will discuss their treatment plans, that patients do not cede all of the expertise and power to the doctor and to the health care establishment, and really advocate for themselves. 

But I think that our attitudes toward medicine were changed fundamentally by the AIDS crisis, and that is something that has a lasting and positive effect. 

But other than that, I remember participating in demonstrations 30 years ago, chanting ‘health care is a right.’ And we still don't have that right. So in a way, the main object of the AIDS activist movement has not been achieved. We had a partial victory with Obamacare 25 years later. And that has been eviscerated by the Trump administration, and I fear will be eviscerated further by this crisis.”

—Written by Amy Ta, produced by Brian Hardzinski