Screaming into the Void: A Conversation with COVID-19 Data Analyst Sara Anne Willette
On fatalism, death, and the pandemic's culture of silence
Sara Anne Willette has been tracking Iowa’s COVID-19 cases since March. Willette has common variable immunodeficiency, an antibody deficiency that makes it so her body can’t protect her from disease, so to her, data on COVID-19 is life and death. As the state’s data shifted and the governor’s office refused to provide clarity or answers, Willette became a rogue analyst, providing a realistic picture of COVID-19 in the state for anyone who would listen. I profiled Willette in May. I talked to her about the quicksand of COVID-19 data and how she drinks a daily pink margarita to cope.
But since then, COVID-19 has become markedly worse in Iowa. Iowa’s governor has mandated that schools teach at least 50 percent of core subjects in person. But the state is not tracking COVID-19 cases in Iowa. Once again, Willette stepped up and is tracking school outbreaks for the Iowa State Education Association.
She’s part of a chorus of epidemiologists, doctors, and nurses in the state screaming for mask mandates and another shutdown. But no leaders are listening. Iowa’s Gov. Kim Reynolds recently issued a mask mandate that is not actually a mandate. Her proclamation asks Iowans to put on a mask if they are going to be closer than 6 feet from a non-family member for longer than 15 minutes. As if the virus waits 15 minutes to spread. And she is canceling sports, except collegiate and high school football. And bars have to close at 10pm because as we know, COVID-19 likes an early bedtime.
In the context of this disaster of leadership and disease, I followed up with Willette to talk about what has changed and what hasn’t with COVID-19 in our state. And we talked about death threats, crying, and the reality of death.
Lyz: How are you feeling? Are you feeling safe? Are you feeling okay?
SAW: I cry every day. I’ve just accepted that’s the norm now. I cry when I do the numbers, especially when I get a notification of a teacher death because that’s extra stupid hard. The numbers are really bad, and the deaths are starting to rack up.
Lyz: A couple of weeks ago, I talked to a teacher who was saying people aren’t getting tested on purpose. Not because they can’t find tests, but because at the high school she teaches at, down near the Iowa-Nebraska border there is a code: “Don’t get tested, because if you’re positive, then you’re going to ruin it for everyone.”
SAW: 53.2% of Iowans voted for Trump. And going forward, literally when I got that statistic, my thought process is, “53.2% of us don’t care if we die.”
Lyz: This isn’t something that’s going to be solved by an ad campaign. This is willful: “I choose to believe this about a virus, and evidence to the contrary, I reject.” And it doesn’t help that the majority of their political leaders spent the whole summer and fall running around without masks, holding large gatherings, making fun of Democrats for taking it seriously.
SAW: I’m not too proud to say I cackled maniacally when GOP congresswoman-elect Ashley Hinson tested positive. Because I’m like, “You were going face to face with people. You put yourself in harm’s way.”
I was reading an article in the New York Times that stated the majority of Americans have no idea where they contracted the virus. Not a damn clue, because the prevalence is so high now. And it’s especially true for the Midwest.
And now, because we’re having about a 50% daily positivity rate, if you leave your house, there’s a one in two chance that you’re going to test positive at some point in the next two weeks.
But something people don’t think about is if you have a low death probability for your age category, you will be, at some point, linked to somebody’s death. It could be your grandparent. It could be your grandparent’s best friend. It could be your neighbor. You will be linked to someone’s death. And the piece that drives me the most batty every day is people are like, “COVID-19 has a low death rate. It’s totally fine.” And the government does this, “It’s only old people.” And I’m like, “Only old people? My aunt is in a facility.”
Lyz: Old people? This weekend, I got a message. My parents’ best friends, they’re both doctors. And they live near Sioux City, and they’re still practicing. They’re my parents’ age; they’re 63. They’re like an aunt and uncle to me. I’ve been friends with their daughter since seventh grade. Old people? They’re 63. These are my parents.
But also, they’re critical infrastructure for healing our state, and now they’re both out for however long. They can’t help people. And it’s like, old people? Who do you think these doctors are? They’re not like 19 year olds.
You’ve been following the numbers for months now and warning people. Do you think you’ve made a difference?
SAW: I hope so. There’s a number of people on Facebook and Twitter who follow me, because there is a huge difference between what our governor says about the pandemic and the reality of it.
Because a lot of the messaging we’re getting from the governor, from the federal administration, is, “No, it’s fine. Don’t worry about it.” I’m like, “No, y’all need to worry about this.”
And the messaging for kids is that it doesn’t happen among kids. And my data really proves that wrong.
Lyz: The last time we talked was in May. I was a better person back in May. I’m just a raw meat sack right now.
SAW: Yeah. I’m an angrier person now. Because I’ve had a few death threats. I got someone fired, because they sent me a threatening message, and I figured out where they worked. And I called and I said, “One of your employees threatened to hurt my family. You might want to solve this problem.” He was a mediocre white dude. I think we can just go with that.
Lyz: Of course, nothing you do makes you deserve this. What’s the thing, do you think, that is setting these people off?
SAW: Sports. It’s football, specifically. When I was first putting this together with the Iowa State Education Association (ISEA), I didn’t have a database yet because we were setting up the contract. And I was just posting, “This school has a positive, this school’s got a positive. There’s a positive on this football team, this volleyball team over here,” and this information comes from many sources. Some are self-reported, but I do ask the school to confirm. Others are from media reports.
So, whenever I would post a sports notification, someone who wasn’t a follower, wasn’t a friend, would come out of nowhere and just lose their mind. And I’m like, “This is what you want to die on a hill for?” High school football? This is pretty sad, and I love football. I love high school football. But I think that this is a year where we don’t need sports.
Lyz: There’s a real toxic sports problem. Because if you question sports, you’re stepping into a shit pile of mythos, and it sets people off.
SAW: No question. For instance, Valley High School in Des Moines, right now, they had a cluster, and it’s supposedly tied to the football team. And they couldn’t go to State as a result of so many positives. They’ve got a cumulative positive right now of 91 kids, and the majority of that has been in the last seven days.
This is why I do what I do. I track this data because it’s important. There’s some layers as to why I’m doing this for ISEA. First off, teachers are going to end up dead. They’ve already ended up dead, and we need to try to mitigate that as much as we can. But the other part of it is, likely, there’s going to be, at some point, lawsuits from parents because their kid ends up dead or disabled or something. And I see it as my personal responsibility to have the data necessary for teachers, families, individual Iowans, whoever. If they need this data later in order to make it so that they can get justice for something that happened, it’s there, and I have it available. It’s horrifying.
The night that I had to add three teacher deaths, because they all showed up on one evening, I was a wreck. I’m bawling on my livestream because a 38-year-old teacher died. He was found by his dad just dead in his apartment.
Lyz: I cried when I saw that, too.
SAW: The weirdest part of all of this is that the governor is shoving everybody back into schools, right? And the argument was, she wanted to protect the kids who had unsafe home atmospheres that were being traumatized on a daily basis.
And I get this. I was that kid. My father beat me for years. Except what we’re doing is, instead of protecting kids from one trauma, we’re instead putting every single child into lifetime trauma. That’s what we’re doing. We’re saying, “You’re going to now experience grief and loss. Your life will probably never be the same again after this.” And that’s the sacrifice we have to make so that the governor can have someone higher up in the government pat her on the back for being a good girl.
I’m a survivor of domestic, familial violence. I would never send kids into school knowing full well that they all, likely, by the end of this, will know a teacher who died.
Lyz: You are immersed in the data. Most people like me were just dealing with it in our own little worlds, but things are really bad. What are you seeing?
SAW: A rapid increase in educator and child positives. And this was in the state’s data. It hadn’t shown up in my school data subset. It started when school started; it was within about the first week, week and a half. And the schools, even the schools that have mandatory masks, are having rapid spread because kids aren’t wearing them universally, teachers aren’t wearing them universally. They’re not being enforced.
Or they’re ripping their mask off the minute they walk outside because somehow, magically, outdoors is safe. And it’s showing up everywhere. Eddyville-Blakesburg-Fremont Community School District had a big outbreak early on, and they pulled everybody back. They went online, and all of the infections, they went back to baseline. But now they’re back, and they’re getting a positive or two.
Iowa City, their spread is horrifying.
Lyz: Have any students died?
SAW: Not that is being reported. That being said, almost all of the deaths and positives now are just being dumped into Unknown, and we have no idea about anything.
Lyz: Explain that. What do you mean by dumping them “into Unknown”?
SAW: When it comes to reporting pre-existing conditions, the state has categories for Pre-existing, for No Pre-existing, and then for Unknown. And then over in the jobs group, there is also an Unknown category.
Almost all the positives for Saturday, it was like 4,800 positives landed in two categories: Unknown, unknown. Unknown for jobs. Unknown for pre-existing conditions. Basically, we don’t know pre-existing conditions or jobs.
On that day, 18 out of the 25 deaths ended up in Unknown, unknown. We don’t know what sectors people are dying in or what age group they’re dying in. I’ve seen 41 to 60 deaths that have been bouncing back and forth between Pre-existing and Unknown for like a week. It’s just going back and forth. And I don’t know what is going on in the state’s data that they don’t have any idea, but there are a lot better ways to do this.
We have some of the best epidemiologists in the world in Iowa. But instead of using them, the governor lit $21 million on fire. For that, we could have spent $3 million, hired all of the staff we needed to contact trace everything, properly tracked and reported all of the data, and the governor could have just been the person who said, “Here’s a mask. Think about a mask.” And instead, she lit $21 million on fire, for what?
And it’s worse than $21 million wasted. Because there was $26 million for Test Iowa, $21 million for Workday, and another half million for newspaper PSA.
Lyz: There was a joint entities meeting in Johnson County the other day, and the big message that came out of that was like, “You think this is bad? In two weeks, it’s going to be ten times worse.”
SAW: In the middle of December, we’re going to have a hundred deaths a day.
Lyz: Oh, my God.
SAW: And that’s just basing it on a 1.8% death rate. It could be more because we’ve had a lot of long-term care facilities get added. So, it might be higher. But it’s going to be bad.
I’m already preparing myself for the high double-digit loads, triple-digit numbers of deaths. Because if I don’t, I’ll have a panic attack when it shows up. I did on the day we had 34 deaths. My mother was here, and I thought, 34 deaths. I had to stand up, go upstairs and have a panic attack on my mother, and my husband and son hugged me until I was done.
It’s bad. It’s really bad. I was cautiously optimistic in May. But now, we’re fucked.
Lyz: I feel like my job since March has been screaming, “Please care!” and the answer that has come back is “No.” And it has broken me.
SAW: I feel like I’m screaming into the void. And one group of people is hearing me. “Okay, we’re going to stay home. We care about ourselves. We don’t want our kids to die.”
If there’s enough virus out there, your mask isn’t going to stop it, your social distancing isn’t going to stop it, an N95 isn’t going to stop it. And I know that because I’ve gotten influenza through an N95. And I think at this point, we have a circuit breaker lockdown, which won’t come until we get Biden.
We’re just going to have mass infection and mass death for the next two-and-a-half to three months. And I’m just going to cry every day.
Lyz: If you’re crying, it’s because you still care. And then if you’re not crying, it’s because you’ve stopped caring. You see these data points not as numbers but as people. But this highlights a problem with data, which is that it’s so easily manipulated and misunderstood.
SAW: Our governor is constantly changing how the data is reported. It’s gaslighting. Twelve hours of my life disappeared yesterday trying to restructure my websites to take the new data. She changed how it was being reported but is doing nothing to stop the pandemic.
Lyz: She’s also been changing quarantine guidance, so it’s very misunderstood.
SAW: I heard from a follower, their child works at McDonald’s. And the manager at the McDonald’s said, “Well, if you live with your parent, and your parent is positive, you don’t have to quarantine. It’s only your parents.” So there’s an exposed person at the McDonald’s in my town. Misinformation is coming from every single level of society. All levels of society.
Another thing people misunderstand about data is that these are not numbers, these are humans. And a death statistic is more than that. This person was loved by others. Was an integral member of their community, and now there’s a hole in those communities.
I don’t understand. I thought we were better than this. I was born here. I was raised here. I was raised to believe that we care about each other. To believe that the integral part of being Iowan is caring about the people who live around you and making your community better and safer and more inclusive. So everybody is a group. We all work together. Everything I learned as a kid in the ’80s, it’s all untrue.
I’m facing the data. I’m eyeballs deep in it every day. But I’m also having to face the reality that everything I learned as a kid is false.
Lyz: Something that somebody had said to me in the beginning of the pandemic was that if we don’t do what we need to do, by the time we get to the end, we all know and love somebody who died from this. And that was just completely incomprehensible to me at the time. It’s not that I didn’t believe them; it’s just that I didn’t have the emotional capacity to comprehend such loss.
SAW: There’s a lot of fatalism in the Midwest. “If it’s going to happen, it’s going to happen. I can’t control it. I’m not going to do anything. If COVID gets me, COVID gets me.” And I’m like, “All I can do for people who think that way is pray.” That’s it. All I can do is pray that when COVID gets them, it doesn’t take them. I have to pray.
I am afraid that my friends and colleagues are going to end up dead.
Lyz: Part of the fatalism is it’s so selfish. It doesn’t take into account the capacity at our hospitals. We are out of staffed beds.
SAW: Really, the curve for hospitalizations is looking like a logistic curve instead of an exponential growth curve. And that is likely due to the fact that our hospitals can’t handle any more people.
Lyz: Oh, my God.
SAW: Because there’s a difference between beds and staffed beds. You can have a bed available, but you don’t have a nurse and a respiratory therapist and an infusion nurse available to keep you alive.
And that’s setting completely aside all of the Iowans who are going to die from crap they didn’t need to die from. Heart attack, stroke because they couldn’t get the treatment that they needed or they had to delay going to the doctor. I know a person who had to have a valve-replacement surgery, and it’s been canceled because it’s not safe enough to do a valve-replacement surgery now. You need that for your heart to function. And I worry that that person is now going to die at some point in the next few months, because the surgery that they needed in order to stay alive can’t happen. I’m just like, all of this is stupid. All of it is stupid. All of it is preventable.
Lyz: What do you wish the media would do better about covering all of this?
SAW: They need to stop covering the governor. They need to stop it. If the media wants to still give her the space to be herself, the space to make the stupidest decisions on the planet, they need to be fact-checking every single one of them.
Another reality that is under-reported is that there is re-infection in Iowa. Because Monroe County had their first re-infection. There is probably a lot more re-infection. And they’re not telling us because they’re only counting people positive once.
And once a person is positive, they’re positive. They might get another positive test. But because we aren’t given the test case data, individual tests that everybody takes, we can’t know when re-infection is happening. And IDPH sure isn’t telling us. Monroe County Public Health mentioned it. Likely it’s because one of the county health nurses had to go in and notify the system.
Lyz: What other problems are you seeing in the data?
SAW: Often we have removals from the data. And it used to be that it was because someone drove down to Woodbury, got a test, but they live in Sioux. So they moved the positive back up to Sioux to where the person lives.
But we have recoveries being removed, and they’re occurring at the exact same time as deaths get added.
So, back on the 28th of June, when the governor decided that after 28 days, if you haven’t been contact traced, or if you haven’t been hospitalized, you’re magically better.
That is the metric. That’s the reason that we have an almost perfectly straight recovery line, because the state is just recovering people. Whether or not they get contact traces. We don’t have enough contact tracers. So I’m assuming that 99% of people don’t get contact traced.
So when a person gets recovered at that 28th day, they go into the recovery column. They get added as a person there, but then when they die, because they were hospitalized and they ended up dead, and that death certificate processes, they have to pull out the recovery and then add the death. And they have to move that person to the new column. And it happens a lot.
Because we don’t have a specific de-identified data set with unique IDs. We can’t be 100% sure, but the frequency with which recoveries are removed and a death is added suggests something is happening.
Lyz: So, somebody considered recovered dies from COVID? That doesn’t sound recovered to me.
SAW: And we’re not tracking recoveries the right way. We need to have short-term acute recovery tracking, and we also need long-term tracking, and we need to be keeping in contact. Again, we need contact tracers, but we need to be keeping in contact with these patients so that we can see in Iowa, what does this look like long-term? How is this affecting our medical system? How is this affecting the economy? How is this affecting the individual lives and life and quality of life of Iowans? Both on a county level, but on a state level, too.
Most of the people I know that have gotten COVID, they’ve never gotten a phone call. Depends on where you are. Most counties are underwater; it’s not going to happen.
Lyz: Something the state has lost the thread on: The false negatives through Test Iowa. We know that false negatives were a problem because the state refuses to give us separate Test Iowa data. I know there are multiple FOIA requests for that. That the governor is just not answering.
SAW: Whenever I have an Iowan ask me, “Oh, my god, I got exposed,” or, “Oh, my God, I’m starting to get symptoms. What should I do?” I’m like, Test Iowa may or may not have appointments in most of our locations. It’s booked up through like a week from now.
So I say, go to doineedacovidtest.com. Go to Walgreens. Go to Illinois if you have to.
Then if someone says, “My Test Iowa was negative, and I’m still symptomatic,” I say, “Don’t go anywhere.” Because the chances of that person having COVID are pretty high, even with a negative test. If you can’t prove it’s something else, you need to assume it’s COVID.
The reality in our state is this: Whatever number of positive tests you see in a day, multiply that by five.
Lyz: Oh, my God, are you fucking kidding me? Oh, my God.
SAW: Mike Osterholm, of the Center for Infectious Disease Research and Policy in Minnesota, has been saying it for a long time. Assume five to ten times what is being tested because, to this day, one person in a family gets tested. They’ll tell five more. You can’t get tested. You live with a positive, you’re positive, assumed positive. You’re not going to show up in the data, but you’re probably positive.
Lyz: There’s a culture of silence, I think especially around schools, which you’re penetrating. Your work right now is penetrating this culture of silence on the disease in schools. You’re seeing significant spread there. You’re seeing teachers getting sick. You’re seeing teachers die, but what is it like trying to penetrate that?
SAW: I would say probably about 50% of the data is schools being transparent via dashboards, which is great. Those usually line up with parent notifications that come in. So I have an extra method of checking the numbers to make sure that the schools are reporting what they say they are reporting. The other 50% is a combination of parents and teachers reporting school notifications. The schools are notifying people in the district, but they’re not being public about it.
I don’t have all the districts because some of the districts aren’t even reporting at all to their own people, which is horrifying in its own way. For instance, Waterloo, everyone that I know in Waterloo School District, they knew somebody who was sick, but there’s no school notifications. A classroom would shut down, and no one would know why, because the district wasn’t telling anyone.
A school nurse in Northwest Iowa called me a scammer. And she called other school nurses in Northwest Iowa and told them to never answer any of my emails about COVID positives in their districts, because I’m a scammer.
That district, by the way, had a massive outbreak.
Lyz: What about private schools?
SAW: That’s a brick wall. The few notifications I get from private schools have come from parents or teachers.
Lyz: What should people be doing right now?
SAW: Stay home. The way I think at this point: You don’t care about others, okay. But for God’s sake, give a fuck about our doctors and nurses. Because if we end up overwhelming the healthcare system, which we’re going to, doctors and nurses start dying, then you’re fucked, too. Because then there’s no doctor and nurse to take care of you.
You don’t care about anybody else? I can’t make you care about anybody else. But Jesus Christ, care about yourself.
Lyz: I definitely don’t want to die. I want to live to be 102 and be one of those women who is so old and so mean.
SAW: You wear bright red lipstick and you just throw it at people?
Lyz: But people put up with me ’cause they’re like, “She’s old. She remembers the pandemic. She’s part of history.” And I’ll be like, “I’ll show you history.” And then drink a glass of whiskey and throw it at somebody because that’s my dream. I dream big.
SAW: I realized something a couple of months ago. This was before schools went back and before I contracted with ISEA. It occurred to me that I am working with the data that I will likely work with for the rest of my life.
This is never going to be over. My plan is to go to grad school when all this is done. It’ll be online because I don’t trust other humans anymore. I will end up going to grad school, doing infectious disease research and epidemiology. I plan on working with this data for the rest of my life and figuring out what the hell went wrong.