Pandemic Cases, Mask-Wearing, Vaccines, and Everything in Between
Terri Wilder: Thanks so much for talking with me today. I’m really excited to learn more about the COVID-19 timeline you helped develop. Can you tell me about the history of the timeline and why it was created?
Tracy Swan: Absolutely. I do a lot of work with the International Treatment Preparedness Coalition, known as ITPC. One of their projects is Make Medicines Affordable.
And MMA got a Unitaid grant, and as part of that grant, I’m writing toolkits for people who want to do intellectual-property work. So when they are fighting to get access to a generic version of a medicine, they need to know things—to build a case, to discuss with policymakers, to talk about the epidemiology, the natural history, prevention, transmission, the drugs that are in development, the drugs that have been approved, what WHO recommends, what the intellectual property and regulatory barriers are that make it difficult for people to access affordable versions of these drugs, etc.
It’s basically a place to find all of this information, where people can pick and choose and draw what they need, all in the interest of increasing access to medicines, particularly in middle-income countries. They’re not included in voluntary licensing agreements from pharmaceutical companies, and they often have to pay unaffordable prices for treatments for, say, HIV, hepatitis C, and tuberculosis.
So, my original agreement was to write a TB toolkit, an HIV toolkit, and a hepatitis C toolkit. I had pretty much gotten a lot of work done on the hep C and the tuberculosis toolkits. And then COVID came along, and I got asked to delay the HIV toolkit and prioritize the COVID toolkit.
So, literally, the epidemic was unfolding into a pandemic before my very eyes, especially since I moved somewhere that went immediately into lockdown after I got there. So, I really wasn’t going anywhere or doing anything.
There’s still so much to learn about the coronavirus and COVID-19. I realized to try and write any kind of definitive toolkit was sort of a fool’s errand at that point, and that one really good way to tell the story was to write a timeline as part of it and, at the same time, to sort of extract what I was learning from the timeline and put it in all the proper toolkit sections.
But the timeline got really big, and I thought, you know, someone wanting to use a toolkit might not want a 90-page timeline. They just want a summary of, say, what the deal is with epidemiology, or what the deal is with human rights, or what the deal is with patent barriers. So, I separated the timeline from the toolkit. The toolkit will be released very soon, as well.
I suggested to my wonderful colleagues at ITPC that we put it up as a separate thing. They loved the idea. The people who did the visual work on it and all the web work have been absolutely amazing. They made it so much better.
But that’s how it came forward. I was so frustrated that this terrible pandemic was happening and that all I could do was watch it in front of my laptop. It was kind of my love letter to a world that’s going through such a hard time to say there’s got to be something I can do. And this information will be useful in the future, even if there’s not much people can do with putting the pieces together at the moment.
Wilder: It’s an enormous undertaking. How many hours did it take to put it together? And what kind of research methods did you use to gather this information?
Swan: I put in so many hours, I can’t even count. What I started with is: The New York Times has had really good daily briefings. The Guardian has had really good daily briefings. CNN has some good stuff. Reuters has some good stuff. Al Jazeera has some good stuff. Some of the South African newspapers have some good stuff. So, if I found one story somewhere, I would just follow it.
Here’s an example: I was reading something that suddenly mentioned the Tanzanian variant. And I was like, “Uh, what’s that?” I didn’t know about that one. I would just Google things until I found things. And because I’m used to doing research, if a report mentioned a paper, if it was a preprint paper, I would mention that it was in preprint and not peer-reviewed, but still include links to everything. I would read what the paper actually said, not what the description of the paper was. So, I would read both, just to see how aligned they were, and then try to summarize things as briefly and clearly as I could.
I was going to try and update it every week, but it’s looking like every two weeks. Each day, I look through all these different sources. Oh, and you know the [Johns] Hopkins coronavirus tracker? Bloomberg has had some really good things. I’ll paste in the web links, and then I’ll go back and spend like a day or two during a week or two weeks, and just go to everything chronologically and fill it in.
Wilder: To date, the timeline has plotted over 350 key developments. It covers everything from number of cases to vaccines, mask-wearing, COVID-19 long-haulers, policy decisions, variants, travel bans, and treatment, and really everything in between.
Can you say more about these themes or categories, which are also color-coded?
Swan: The brilliant web designers did that. The categories are natural history, epidemiology, testing, vaccines, treatment, and policy.
What I really wanted to track, and what is really horrifying to me as an activist, is not only the bad public-health decisions or the idea that it’s public health versus the economy instead of that they’re hand in hand, or the blatant disregard of human rights under the guise of public health—it’s the bad, bad leadership decisions. We can see patterns now. You lift restrictions. You tell people they don’t have to wear masks. And even now, with vaccines being rolled out, you’re still seeing, in sections, increases.
It seems like there’s almost in some policymakers’ minds an acceptable level of infections. Like, we’ll let it get to this point. Some of it I know is based on an epidemiological data modeling. But some of it doesn’t seem to be based on anything rational at all.
I think something that’s rational, that’s really pro public health, and in favor of people’s survival, but doesn’t have ridiculous expectations, like testing people and then telling them they have to stay home without giving them any money for food or rent or medicine—that makes no sense to me. Why would someone want to go get tested if they couldn’t afford to stay home?
A Tool for Activism and Lessons for Health Care Systems
Wilder: Do you have thoughts on how the timeline might be used as a tool in activism and, specifically, in transformative activism?
Swan: I’m hoping that people will come up with their own really creative ways to use it. The most obvious case is the repulsive inequity in vaccine distribution, where there are still certain countries that haven’t given people a single vaccine, and where variants are continuing to sweep across the planet, because globally, we haven’t come up with a way to ensure that people everywhere have access to a vaccine for a virus that’s affecting everyone everywhere.
It’s almost an assumption that people who live in low- or middle-income countries don’t want to be, or deserve to be alive as much as people who live in high-income countries. The way I channel my rage at this is by very calmly putting out the data and saying, “I have wonderful colleagues doing this.” Like, here’s a place you can go and pull the information that you need when you need it, for all the cases you’re making, including for the TRIPS waiver, so that the patents on vaccines don’t prevent countries from being able to produce them and vaccinate the people.
Wilder: What were some of the key findings of the timeline and your analysis of looking at this enormous amount of information? And what were your takeaways about what’s happened to the world?
Swan: One of them is the glaring lack of countries looking at their health care systems. Everything right now seems to be all about the vaccine, but you look at places like Brazil and Egypt and many other countries, where there have been oxygen shortages. That’s a most basic thing. Are we going to fix that? Because this isn’t going to be our only pandemic.
When people talk about this isn’t going to be our only pandemic, they seem to be talking about it still in terms of vaccines or this sort of vague response thing—not about access to medicines that people need every day to stay alive, and access to research, not just for COVID-19, but for many conditions that people have that are still poorly understood or that there are not good treatments for.
I don’t hear a lot about really beefing up the public health infrastructure. You hear a lot in the U.S. about racial disparities in access to health care. I know that there’s work being done, particularly under the Biden administration, to address access by getting vaccines to people. But that’s like a Band-Aid on a bullet hole without really looking at the underlying health of those infrastructures that deliver care to people.
At this point, I really hope that in a few months there’s a real push to strengthen health care systems globally, because they all need it. The death rates in some high-income countries have been absolutely shocking—countries with really good health care systems.
And the toll it’s taken on health care workers? I think of them all the time. They were a major motivation for me, thinking about what it must be like to go to work every day and see people die in front of you, without being able to help them very much, and wondering if you, yourself, and your family would get COVID-19—I mean, that’s some incredible bravery.
Things like Boris Johnson’s government saying they could have a 1% raise. It’s just mind boggling to me that you could insult people like that who put their lives at risk every day and really stepped up, by not giving them, say, a more obvious reward.
“A World Where People Look Out for Each Other”
Wilder: I wanted to mention a couple of the plots on this timeline that are HIV-related, in particular, from June 10, 2020, where it says: “Data from South Africa reports a higher risk of death from COVID-19 among people with tuberculosis (TB) and people living with HIV—regardless of viral suppression from antiretroviral therapy (ART). The risk was 2.5 times greater among people with TB and 2.7 times greater among people living with HIV.”
And from July 6, 2020: “WHO warns that progress against HIV may be stalled by COVID-19–related disruptions in access to antiretroviral therapy (ART) and health care services. Overall, 73 countries have ART supply shortages; 24 of them—which are home to over 8 million people on ART—have critically low supply levels or have been experiencing stock-outs.”
That’s something that a lot of HIV activists were very concerned about here in the United States. Around the world, how is shutting down, with people not being able to physically go to work to deliver services or care or trucks to deliver medications going to impact our efforts on a national level, or globally, on ending the AIDS epidemic?
Swan: I think it’s an example of focusing on the most nimble, rather than the most resilient, supply chains. In many countries, the HIV health care system is the model around which other services can be built or delivered. And to see it falter and to realize that, although it’s resilient, it’s also quite fragile, again goes back to what I think about really shoring up health care systems and putting more money into them and having redundant supply chains, so that you’re not just dependent on those truck drivers, and that there are other ways that medicines are getting to people.
There hasn’t been a lot of coverage of some of the completely heroic work of colleagues around the world who have literally gotten on their motorcycles during lockdowns and delivered [antiretrovirals] or methadone to people across their country. The community response has been amazing. And when I say community, I mean the HIV community, but I also mean the broader community, just as human beings, primed to help one another out when they can.
Wilder: I have to admit that I kind of chuckled at one of the time points that said, “President Trump holds a coronavirus vaccine summit to claim credit for coronavirus vaccines. Members of the incoming Biden administration are excluded. Vaccine producers Pfizer and Moderna declined invitations to attend, and other actors involved in the vaccine distribution, such as CVS, FedEx, UPS, Walgreens, may choose not to send their CEOs.”
Swan: I’m glad you enjoyed that as much as I did. It’s so great when you don’t really have to do anything to the news. It’s just perfect as it is, and it tells you everything. And that was just such a great example.
Trump and Bolsonaro—especially and notably—they have blood on their hands. Their actions are responsible for so many people’s deaths. They don’t need to be bashed, but they can perfectly, easily be called out on documentable, fact-based information.
Wilder: I want to end by asking: Why is it important to document history? And, particularly, something like a viral global pandemic?
Swan: Well, I lived through the unfolding of HIV and I think it’s in some ways changed, completely, dramatically. In other ways, it hasn’t changed nearly enough as it should in the 40 years since it was first identified.
I don’t think anyone who reads about this is going to understand what it felt like to live through it. I read about the Spanish flu epidemic, but it didn’t give me the feeling that someone had who literally lived through it. It’s the biggest cliché in the world, but unless we learn about the mistakes of the past, we are doomed to repeat them. And we’ve already started repeating some of our own mistakes in less than a year. If people want to document this in the future, hopefully it will help governments do a better job of allocating resources and responding to pandemics in a way that supports human rights and in a way that doesn’t privilege intellectual property above people’s right to simply protect themselves and survive through a pandemic.
And so, I love history. I’ve learned so much from it. I’m hoping that people will use it when they’re looking back at this and think, “My goodness. What was it like not to go out of your house once for three months? What was it like to say, ‘There’s a skating rink in my city that’s full of bodies?’” I hate thinking that all these people have died and that we may not learn to do better, starting from a year ago, going forward. And that also we’re still telling people, “Wear a mask. Social distance.” And some people just don’t want to do it, for whatever reason.
I think learning from this maybe will stop people’s reluctance and will move people towards a social consciousness that’s all about a world where people all look out for each other, instead of where people only look out for themselves. We’ve seen where that can lead. This has really shown that in the harshest possible light—and it’s not sustainable human behavior.