Why didn’t the US have national data about COVID-19?

Al Letson: From the Center for Investigative Reporting in PRX. This is Revealed. I’m Al Letson.     Well, hey, hey, hey. Today is Mardi Gras and people all over the world are gathering in New Orleans, as they like to call it, to celebrate.     In February of 2020, more than a million people crowded the streets and bars of New Orleans.   Amy Gleason: So, we went to Mardi Gras. Had a great time.   Al Letson: Amy Gleason was there with her husband. She captured it on her phone.   Amy Gleason: That’s a parade. Lots of parades, more parades. Partying with a hundred thousand of my closest friends. Seems like another lifetime ago.   Al Letson: Like so many of us back then, Amy didn’t understand the danger.   Amy Gleason: I remember like everyone, hearing about COVID and mainly in China, and then a little bit, it’s kind of in Seattle, but it really wasn’t something I was thinking a lot about. My family wasn’t really talking about it.   Al Letson: On February 25th, the last day of Mardi Gras, there were only 10 confirmed cases of COVID in the U.S., but two weeks later, the nation had transformed.   Speaker 3: In the U.S., there are now more than 1000 cases and 30 people have died. Washington D.C. mayor declared a public health emergency in the nation’s capital.   Speaker 4: Bottom line, it’s going to get worse.   Al Letson: Amy Gleason was a technologist at the White House and on March 11th, she got a new boss.   Amy Gleason: We walked over to her office and knocked on the door and kind of introduced us as, “Hey, we have some tech help.”   Al Letson: Amy would now be working for Dr. Deborah Birx, coordinator of the White House Coronavirus Task Force.   Amy Gleason: And Dr. Birx really didn’t understand exactly how we could help, but she said, “Sure, come on in. Let’s figure this out.” I’d only seen her on TV.   Dr. Deborah Bir…: Thank you, Mr. Vice President. It’s a pleasure to be here. I just arrived from South Africa last night.   Amy Gleason: Before that, I certainly had never met her in person.   Al Letson: At some point during Amy’s first day, she got pulled into a meeting for people working on the pandemic.   Amy Gleason: And we went into the secure room. This was pretty early and not a lot known and a lot of worry and a lot of anxiety and a lot of new people. People are all coming into the response and it was a little intimidating and everybody was pretty keyed up.   Al Letson: This was two days before President Trump would declare COVID-19 a national emergency. Amy says the mood was tense.   Amy Gleason: It was not with Dr. Birx, but somebody had the ability to say, “Hey, I think we need a shot right now.” And somebody passed around a whiskey bottle with little cups and everybody took a little shot and calmed everybody down a little, and I was like, “Okay, we’re doing this and we’re going to do it together.” And it felt pretty good.   Al Letson: Then Dr. Birx gave Amy her first assignment.   Dr. Deborah Bir…: I need every city, I need every county, I need every state, and I need cases and test positivity and hospitalizations.   Al Letson: Dr. Birx wanted to know how many COVID cases there were in the United States.   Amy Gleason: I was like, “Wow, aren’t you getting that from the CDC?” And she’s like, “Well, I haven’t been able to get it yet, but maybe you can figure it out.”   Dr. Deborah Bir…: There is no U.S. data that I could rely on.   Al Letson: We live in a golden age of data. There’s data about how many steps you take, how much electricity we use, what movies we watch. So, why was there no good U.S. data about COVID? In a pandemic, if you need to choose where to send emergency stockpiles of masks and ventilators, it’s based on data. If you have to decide whether to close schools, data. If you need to figure out who’s most at risk for the virus, data. It’s how public health agencies know what’s happening and respond effectively. Without it, they’re flying pretty blind.     We partnered with members of the COVID Tracking Project to investigate why the U.S. underperformed during the COVID pandemic, especially when it came to having good data. We first brought you this three-part series back in 2023. This is part two. Epidemiologist Jessica Malaty Rivera is our guide.   Jessica Malaty …: In March of 2020, the World Health Organization declared COVID a pandemic. We knew it was spreading throughout the U.S., we just didn’t have the data to know where the outbreaks were happening. Amy Gleason was working on the U.S. government response to the pandemic.   Amy Gleason: Hi, how are you?   Jessica Malaty …: She didn’t want to do an interview when she was still at the White House, but after leaving government, she invited producers Artis Curiskis and Kara Oehler to her home in Nashville Tennessee.   Amy Gleason: Excuse the mess. I apologize.   Jessica Malaty …: On a one-hundred-degree day in early fall, they stop by Amy’s high-rise apartment.   Kara Oehler: Look at your view. It’s so gorgeous.   Jessica Malaty …: Kara goes into the bathroom to wash her hands, and as she’s drying them, she notices that the towels have the White House seal sewn into them.   Kara Oehler: Amy, your towels look like they came from the White House?   Amy Gleason: Have you not seen all my White House stuff?   Artis Curiskis: You steal?   Kara Oehler: I thought you stole them at first.   Amy Gleason: No.   Jessica Malaty …: It’s not just the towels. There’s White House stuff everywhere.   Amy Gleason: I’m like obsessed with White House things, so I have a lot of them. This is my White House football. I have White House… White House wine glasses.   Jessica Malaty …: Amy started working in the White House in October, 2018. She was part of a department called U.S. Digital Service, USDS for short. Some people call it the Peace Corps for Nerds.   Amy Gleason: It does have a little bit of a startup feel. A lot of people wear T-shirts and hoodies even when you’re walking into the White House.   Jessica Malaty …: President Obama started USDS after the botched launch of HealthCare.gov.   Speaker 7: Error messages, website crashes.   Speaker 8: An hour per page to load.   Speaker 9: Serious technical issues affecting online enrollment.   Jessica Malaty …: On the day it went live, nearly 3 million people tried to sign up for Obamacare, but only six were able to create accounts on the website.   President Barack Obama: Nobody’s madder than me about the fact that the website isn’t working as well as it should.   Jessica Malaty …: USDS was created to prevent more embarrassing moments like that from happening. It was a way to bring people into the government from places like Google, Facebook, and other tech companies. Before Amy joined USDS, she ran her own healthcare company. Amy started it after her daughter got sick. She wanted to improve the way medical records are shared. In 2015, her work was recognized by the Obama administration.   Speaker 10: Next, Amy Gleason. Let’s have a hand for all of our champions.   Jessica Malaty …: That experience gets Amy thinking about working for the government and a few years later she joins USDS. She has no idea that that decision will one day land her on Dr. Birx’s data team working for the White House Coronavirus Task Force   Speaker 12: 38 deaths so far.   Speaker 13: At least 11 other long-term care facilities now have infected residents.   Speaker 14: The number of cases now up above 1200 nationwide-   President Donald Trump: We will be suspending all travel from Europe to the United States.   Jessica Malaty …: March 12 is Amy’s second day on the job with Dr. Birx. She and other team members crammed together in a tiny White House office, and by this point, Dr. Birx has been the coordinator of the Coronavirus Task Force for just 10 days.   Dr. Deborah Bir…: We’re drawing on whiteboards and we’re drawing on pieces of paper and I’m saying, “Okay, this is what I need.”   Amy Gleason: Dr. Birx is like, “Okay, well, the thing I need is to understand how many cases and deaths are happening in each county.”   Jessica Malaty …: Amy thinks, surely the Centers for Disease Control and Prevention must be tracking COVID deaths, but when she reads the email with instructions on how to log into their database, she’s surprised.   Amy Gleason: I opened it up and was like, “Oh, I need a notary.”   Jessica Malaty …: But finding a notary during a global pandemic isn’t easy.   Amy Gleason: And you might recall that everything was closing down at this point in middle March, and so there weren’t really many notaries around.   Jessica Malaty …: At the time, Amy is living in an apartment building in D.C. and she wonders if maybe someone there knows a notary, so she types up a quick message and sends it to her neighbors.   Amy Gleason: Today, is there a notary here?   Jessica Malaty …: To her relief, she finds one. They meet outside on a Sunday afternoon.   Amy Gleason: I’m sure she was like, “Who is this crazy person asking me to notarize this form for the CDC in the middle of a pandemic?” But she did it.   Jessica Malaty …: For a digital expert like Amy, it all just feels incredibly outdated and slow.   Amy Gleason: I had a top secret clearance and it still took me a long time to be able to get access to the system.   Jessica Malaty …: After Amy and her team finally get access, they start looking at the data and meet with the CDC to talk through it.   Amy Gleason: And so we are trying to understand why their account didn’t match what you saw on Johns Hopkins website and all these different public sites. And they were explaining that a lot of times the data is very slow to come through the system into the CDC, so it was really hard to get an idea of what was really happening.   Jessica Malaty …: States are processing tests and recording COVID deaths, but those results aren’t showing up in the CDC’s data. Dr. Birx is shocked by how bad it is.   Dr. Deborah Bir…: We are calling the hospitals, and we knew people were dying, but no deaths were being reported. And I realized then the length of time between someone dying in the United States and the CDC recording that as a death could be anywhere from four weeks to three months.   Jessica Malaty …: They need to know where COVID is spreading now. So Dr. Birx tells Amy and her colleagues to look elsewhere.   Amy Gleason: And I happened to see this post on Twitter that had data in it, and I pulled it up and it looked pretty good. It had everything by county, it had cases, it had deaths, so I reached out. It’s like, “Hey, where are you getting this information?” And I just started asking a lot of questions, and so he told me that it was with the Conference of State Banking Supervisors.   Jessica Malaty …: In a moment of national crisis, the White House tally for U.S. COVID-19 cases and deaths isn’t coming from the CDC. It’s coming from the CSBS.   Brennan Zubrick: The Conference of State Bank Supervisors.   Jessica Malaty …: Brennan Zubrick helps manage analytics for the Conference of State Bank Supervisors. It’s a group that supports financial regulators and the banking industry. One of the things it does is it looks out for threats to the financial system, which is why Brennan was tracking COVID.   Brennan Zubrick: Somebody had forwarded an email to my inbox that was from the White House. It was so surreal, and so I got on the phone with a team at the White House.   Amy Gleason: And he was just like, “And you’re really from the White House? You’re really calling from the White House?”   Jessica Malaty …: Brennan tells Amy that he and a programmer are getting the data secondhand. They’re pulling it from a site that’s scraping information from county government websites across the U.S. Brennan says his colleagues check the data and then plot it on a map so the bank supervisors can see it, but it turns out it’s not just bank supervisors and the White House who are interested.   Brennan Zubrick: It crashed because I forget what the page views were, but it was like a hundred thousand in 10 minutes or something. It’s like when Kylie Jenner sold her lip kits and they sold out in 16 seconds and the site crashed. I kind of felt like that.   Speaker 20: You felt like Kylie Jenner?   Brennan Zubrick: Yeah, I broke the internet.   Jessica Malaty …: The bank people are the only ones who seem to know how many COVID deaths there are in the U.S., which Brendan says feels a little weird and wrong.   Brennan Zubrick: I’m not a public health expert. My team, we work with financial services regulators, which are just not known for working with health data.   Jessica Malaty …: Still, it was the best county level COVID information Amy could find.   Amy Gleason: And that was the daily report that was used for the White House numbers, and that went across the response.   Jessica Malaty …: This banking data is just a bandaid. The White House can’t rely on it long term. They need better, more granular data, but in order to have that, the U.S. needs more tests.   Dr. Deborah Bir…: At that time, I knew we needed millions of tests.   Jessica Malaty …: But there aren’t millions of tests because the CDC is only testing a small percentage of people with COVID just like they do with the flu.   Dr. Deborah Bir…: That was a mistake from the beginning, and that’s what led to this whole cascade of mistakes through January, February, and into March. If you’re going to call yourself the premier public health control and prevention, then you have a moral obligation to definitively diagnose disease and show that you’re controlling and preventing.   Jessica Malaty …: So far, they figured out that the CDC only created about 75,000 tests for state run public health labs. There’s roughly one in each state, but that’s it. There’s no plan to make millions of tests, and this all becomes clear during a congressional hearing on March 11th.   Speaker 21: The Committee on Homeland Security will come to order. The committee is meeting today to receive testimony on the federal response to the coronavirus.   Jessica Malaty …: Dr. Stephen Redd is testifying on behalf of the CDC.   Speaker 21: He’s joined by Dr. Stephen Redd, a medical doctor, an epidemiologist with decades of experience with the Centers for Disease Control and Prevention. It’s my understanding that Dr. Redd was due to retire this month, but he’s agreed to stay on to assist with the coronavirus response.   Jessica Malaty …: Congresswoman Lauren Underwood asks about testing. Dr. Redd tells her that about 1700 people have been tested so far.   Dr. Stephen Red…: CDC has sent material sufficient to test 75,000 people through the public health system.   Lauren Underwoo…: Right.   Dr. Stephen Red…: There are over a million tests available through the commercial system.   Lauren Underwoo…: Yes, sir.   Dr. Stephen Red…: Both of those numbers are increasing as we speak.   Jessica Malaty …: Throughout the two and a half hour hearing, lawmakers press him about tests. Dr. Redd explains the CDC approach.   Dr. Stephen Red…: For public health purposes, every single person doesn’t need to be tested. For example, in the Influenza Pandemic 10 years ago, we weren’t able to test everyone. We didn’t need to test everyone. Our public health interventions were guided by the ability to extrapolate from laboratory tests that we have.   Speaker 24: Of course.   Jessica Malaty …: Representative Bennie Thompson pushes again on tests.   Bennie Thompson: How many test kits do we have as of today?   Dr. Stephen Red…: So on the public health side, 75,000. On the commercial side, over a million. It’s somewhere between one and two million right now. The numbers are increasing rapidly.   Jessica Malaty …: But what he’s saying isn’t true. There aren’t a million tests.   Bennie Thompson: We are trying to give the public some comfort that if you say we have a million kits, then there’s a process that’s defined for those million kits to be accessed.   Jessica Malaty …: Dr. Redd stands by his numbers.   Dr. Stephen Red…: There are over a million tests in the commercial sector with that number increasing almost daily.   Jessica Malaty …: But again, this isn’t the case. We interviewed Dr. Redd in September of 2022.   Dr. Stephen Red…: I think also at that point in time, I probably didn’t know the answer to that question, and maybe I thought I did.   Jessica Malaty …: Dr. Redd figured that millions of tests were being created by someone other than the CDC.   Dr. Stephen Red…: I think people at CDC didn’t feel like it was CDC’s responsibility. I guess that was something that nobody in the government had that responsibility, and that was where things fell apart.   Jessica Malaty …: Because of this massive shortage of tests and confusion from the CDC about how many tests there really are, the U.S. COVID data at this point in mid-March is extremely limited. This makes things even more difficult for Dr. Birx as the coordinator of the White House Coronavirus Task Force.   Dr. Deborah Bir…: They weren’t doing the things that were needed in order to shed light on this virus.   Jessica Malaty …: Dr. Birx says that 80% of existing data at the time is missing crucial demographics like people’s age, race, and ethnicity. So she has to rely on data from other countries to learn about who’s most impacted by COVID.   Dr. Deborah Bir…: So, where I’m getting full demographics in the middle of the night from Europe and Asia when they’re in the midst of their own crisis, I have nothing in this country.   Jessica Malaty …: She learns that people over 70 are dying of COVID at a rate close to 30% or more. Public health experts are beginning to talk about needing to shut the country down. Dr. Birx wants the White House Coronavirus Task Force to recommend it right away, but first they’ll need to convince President Trump.   President Donald Trump: You don’t want to see panic because there’s no reason to be panicked about. You want to treat this like you treat the flu, right? It all will pass.   Jessica Malaty …: Dr. Birx really wants a total of 45 days, but she doesn’t lead with that. She’s going to start by proposing 15, but she needs backup.   Dr. Deborah Bir…: I mean, I was under no illusions that I, as a sole individual who was going to convince the president to do the 15 days and 30 days.   Jessica Malaty …: So Dr. Birx calls together a small meeting. Dr. Fauci comes and so do other CDC and White House officials. They want to recommend that schools, bars and restaurants shut down. They talk about how nursing homes will be the ground zero for COVID, and they want to limit gatherings to fewer than 10 people anywhere in the country.   Dr. Deborah Bir…: I felt like it would be small enough that it would keep large families from ever gathering beyond their size of their family, where I think a lot of spread occurs.   Jessica Malaty …: On Sunday, March 15th, Dr. Birx heads to the White House. She goes straight to Vice President Pence, who agrees to take the new guidelines to the president. Dr. Birx is not invited to this meeting.   Dr. Deborah Bir…: I was so nervous about what was happening in the Oval Office.   Jessica Malaty …: Then Dr. Birx gets news. It’s agreed. The president will announce the new plan on Monday.   Dr. Deborah Bir…: When I got the message that all was well, I could finally exhale.   Jessica Malaty …: But just hours before President Trump’s announcement, the White House team gets blindsided. The CDC releases a recommendation limiting groups to 50 people or less.   Speaker 26: The CDC recommends-   Speaker 27: The CDC says no gatherings of 50 or more people.   Al Letson: Now you’re hearing from the federal government.   Speaker 28: CDC guidelines that say, should not have a gathering of 50 or more people.   Speaker 29: … than 50 people.   Speaker 30: 50 people at least-   Speaker 29: … for the next eight weeks.   Dr. Deborah Bir…: 50 is a small wedding. It just made no common sense to me. 50 would’ve been a catastrophe.   Jessica Malaty …: They had convinced the president to recommend limiting groups to 10 or less. Now the CDC is recommending groups of 50 or less.   Dr. Deborah Bir…: I had spent all this time trying to build consensus, and I needed the public health agency on my side. So, I mean, it was very undermining to me personally.   Jessica Malaty …: Still, the president’s announcement continues as planned.   President Donald Trump: So, I’m glad to see that you’re practicing social distancing. That looks very nice. And this afternoon we’re announcing new guidelines for every American to follow over the next 15 days as we combat the virus, each and every-   Jessica Malaty …: The president is pushing more aggressive recommendations than the CDC.   President Donald Trump: Avoid gathering in groups of more than 10 people.   Jessica Malaty …: And over the next few weeks, governors across the nation start announcing Stay-at-Home Orders.   Speaker 31: Of all the obligations that weigh on me as governor, this is the greatest.   Speaker 32: And this is a responsibility. I do not-   Speaker 33: It’s not a decision that I made lightly.   Dr. Deborah Bir…: So today, I’m taking the most aggressive action yet because I knew the states would act if the federal government said, you need to act now.   Speaker 35: Moments ago, I signed an executive order directing Arizonans-   Speaker 36: For Oregonians…   Speaker 37: Californians…   Speaker 38: Rhode Islanders…   Speaker 39: All Floridians…   Speaker 40: All Michiganders…   Speaker 41: Tennesseans…   Speaker 42: All Ohioans…   Speaker 43: … will be subject to a stay at home order.     Stay home.     Stay home, stay healthy, and stay connected.   Al Letson: With the country shutting down, the White House Coronavirus Task Force has 15 days to try and get ahead of the outbreak, but they still don’t have comprehensive data on who is sick and where to send equipment.   Amy Gleason: We’re getting calls from hospitals everywhere that, “I don’t have any gloves, I don’t have any masks. I’m running out of supplies. I can’t get enough. I’m asking my state. They say, I don’t have any.”   Al Letson: That’s coming up next on Reveal.   Al Letson: From the Center for Investigative Reporting and PRX, this is Reveal. I’m Al Letson. When we left off, Trump had just announced a fifteen-Day lockdown because of COVID. This is in March of 2020. Hospital ICUs are running out of beds for sick people. N-95 masks and COVID tests are hard to find. No one knows for certain how many people have the virus or how many people have died. Infectious disease expert Jessica Malaty Rivera takes us to the nation’s capital during that surreal moment.   Jessica Malaty …: The country is shut down, but the White House is a busy place. Amy Gleason is putting in twenty-hour days.   Amy Gleason: We would leave at four in the morning from the White House, walking down the steps and get home. You could take a shower, maybe you got a 30-minute nap and you had to be right back there. So everybody was kind of running on fumes.   Jessica Malaty …: White House Coronavirus Task Force coordinator, Dr. Deborah Birx has given her data team a difficult task. She wants all the states and all the hospitals to have data pipelines that flow into a single government database.   Amy Gleason: Dr. Birx had really felt it was important that we had one central place that we put all the federal COVID data.   Jessica Malaty …: They work quickly to set up a central hub to collect and share COVID–in data across federal and state agencies. It’s a place to load in data about cases, tests, hospital admissions and ventilator supplies, and it’s housed at the CDC. They want every hospital to update it daily, which is a daunting task. Meanwhile, Amy starts getting calls about supply shortages.   Amy Gleason: I spoke to some people I knew in Seattle. They were one of the first big areas hit. They were helping me figure out, okay, probably for every COVID patient, you need this many masks, you need this many gowns. And then that same health system sent me two days later, a picture of them making their own face mask and making their own gowns out of garbage bags. And we all just sat there in this moment like, okay, this is why we’re here.   Jessica Malaty …: At this point in the pandemic, the CDC isn’t tracking which hospitals are running out of equipment like ventilators and masks. Not only that, they’re not tracking how many people are in the hospital with COVID. Amy also learns that the CDC isn’t connected to all the hospitals in the U.S. They have a system called the National Healthcare Safety Network that gets reports from about 60% of hospitals. The CDC uses this in order to model what is happening across the country based on estimates not actual case counts. Dr. Birx pushes back on this approach.   Dr. Deborah Birx: And when I went back to them and said, I need the data in real time, not the model. Honestly, senior, very senior people at CDC said the model’s more accurate.   Jessica Malaty …: Dr. Birx is frustrated. You can’t tell how many people are in hospital beds in Tulsa based on how many people are in hospital beds in Houston.   Dr. Deborah Birx: I just couldn’t get my head around it. Geography matters and your data needs to be down to that most granular level. They truly believed that their model was better than the real-time data. It was like they were locked into perfection of the data and reporting rather than data is a tool to address major public health problems in real time.   Jessica Malaty …: Dr. Birx doesn’t agree that the model is better. She’s charged with getting tests manufactured and ventilators distributed to hospitals. She needs an actual address of which hospital needs which ventilator. The CDC model can’t do this.   Amy Gleason: These are fundamental scientific disagreements.   Dr. Deborah Birx: I used to say to Amy, we can spend our time trying to convince them or we can just act because we need to get this done because it’s a crisis.   Jessica Malaty …: It’s March 19th, a week after President Trump declares COVID a national emergency. The Federal Emergency Management Agency takes over and the FEMA Building becomes the headquarters of the COVID response.   President Donald Trump: Today, FEMA is activated in every region. We are at level one, level one being the highest level.   Speaker 44: National Response Center in Washington. D.C is activated.   Speaker 45: FEMA headquarters in Washington. D.C. Right now.   Speaker 44: Picture a large room with a number of computer stations, screens, secure facilities for communications.   Speaker 46: We want to take you live right now to FEMA headquarters.   Speaker 45: President Trump is holding a video conference with the nation’s governors.   Speaker 46: Briefing governors around the country.   Speaker 44: With governors about the Coronavirus response.   Speaker 46: Let’s listen in.   President Donald Trump: Well, thank you very much and it’s great having FEMA involved.   Jessica Malaty …: Dr. Birx is at the video conference.   President Donald Trump: Deborah, if you could say a few words would be great.   Dr. Deborah Birx: Thank you. Mr. President, Mr. Vice President.   Jessica Malaty …: She tells the governors how important it is for the states to report COVID test results and hospital data so supplies like ventilators, masks and tests can get to the right places.   Dr. Deborah Birx: This both test negative and test positives are going to be absolutely essential as well as hospital admissions and CCU beds so that we understand exactly what is required from the federal government. Thank you Mr. President.   Jessica Malaty …: Amy and hundreds of other federal employees rushed over to the FEMA building. It’s an alphabet soup of government agencies.   Amy Gleason: So there are people that were CDC from Atlanta. There were people from FEMA. There are people from HHS, from CMS, from the military, all across everywhere, working on all the different floors at the FEMA building.   Jessica Malaty …: Dr. Birx’s team wants to get all of these different agencies into their new database as soon as possible, but there’s a hitch, a familiar one to Amy. Their new system is housed at the CDC. So in order to get access, everyone needs to get a form notarized.   Amy Gleason: It’s like Friday night at midnight in the FEMA building, and there is no notary there. Couldn’t just show your federal badge to someone. You had to get this form notarized.   Jessica Malaty …: So Amy talks to the CDC. She asks, are there ways we can adapt to the situation?   Amy Gleason: Do this differently.   Jessica Malaty …: We need to get all these people into the system. Now.   Amy Gleason: This is not normal times.   Jessica Malaty …: DC is shut down.   Amy Gleason: We have all these people, we need to get them into the system.   Jessica Malaty …: People just can’t hop to UPS to get a form notarized. Is there a workaround?   Amy Gleason: We can’t rely on notarized forms. Let’s find a new way. And the CDC said they just couldn’t tolerate that risk process. Everyone is at home closed down. You walk in DC it looks like an apocalypse, exponential growth of cases and deaths. And so then the shock of somebody saying, “I’m sorry. I can’t give you access until you get this form notarized.” Well, where am I supposed to get a notary to sign this? It’s like the horror of this situation and then to constantly face these walls of, “Oh, we can’t do that because we can’t do that, because we can’t do that because,” starts to get you to be really frustrated.   Jessica Malaty …: And so the nation’s federal COVID data platform moves out of the CDC and over to Health and Human Services because of a notarized form.   Amy Gleason: We just couldn’t find a solution that would help CDC feel comfortable with the risk and help us get what we needed. And so we moved the system at that point from CDC System to be an HHS system, and that’s where it became named HHS Protect. We put hundreds of people into that system in the first two weeks, hundreds of federal users so that they could start to be able to see the data.   Jessica Malaty …: One of those people is Aaron Hedlund. He’s an economist working with the White House Council of Economic Advisers. He gets a call and heads to the FEMA building right away.   Aaron Hedlund: I got word from the West Wing that they wanted someone from the Council of Economic Advisers to get embedded over in FEMA to basically look over the data stuff to make sure it was just being done well. So I actually remember just rushing out to the parking lot and just driving over to FEMA.   Jessica Malaty …: The council needs data in order to come up with strategies to keep the economy going while everyone is at home.   Aaron Hedlund: We wanted it to be the case that when things opened up again, that the economy would bounce back quickly without a lot of overhang of problems.   Jessica Malaty …: Aaron meets Amy. She’s trying to get the data from hospitals. He’s trying to get enough data to model how COVID might impact the economy.   Aaron Hedlund: She was sitting on a chair feverishly on the computer, and I was feverishly trying to figure out what all was happening.   Amy Gleason: I called hospitals.   Aaron Hedlund: How many people were showing up to hospitals?   Amy Gleason: What kind of information are you tracking.   Aaron Hedlund: How many people were having COVID, all those various things because there wasn’t really a national infrastructure for that data to just naturally flow in because it was just so urgent, and speed was just such a necessity. They were submitting data any way they could. So they were literally just writing stuff down on anything and getting pictures of napkins with coffee stains, with numbers of ventilators emailed in most cases to Amy.   Jessica Malaty …: Amy’s team keeps calling hospitals, but making phone calls to every hospital every day is not sustainable.   Aaron Hedlund: Every piece of data mattered. The idea was to have granular data that was actually actionable for tactics on the ground. This is why we were giving information to FEMA so they would know exactly where to send personnel and resources.   Amy Gleason: People were just so frantic. How many people are in the hospital? Do we have hospital beds? Are there ventilators? How many ventilators do we need? I probably got asked for hospital data 300 times a day.   Jessica Malaty …: Amy learns that they’re not the only ones getting data from hospitals   Amy Gleason: Because everybody was trying to figure out to collect hospital data. CMS was trying to figure it out, and CDC was trying to figure it out. We were trying to figure it out. FEMA was trying to figure it out.   Aaron Hedlund: We would reach out to a hospital and they would’ve had contacts from four other people somewhere within the federal government asking for some variant of the data, and they just weren’t sure, well, who do we actually submit the data to?   Jessica Malaty …: With all the overlap and confusion, the federal agencies have a meeting to figure out who was collecting what data and to make sure they’re not duplicating work.   Amy Gleason: And so we came up with a whittled down list that we thought were pretty important. Things like, how many beds do you have? How many are full? How many ICU beds do you have? How many are full? How many ventilators do you have? That kind of stuff.   Jessica Malaty …: They hope this meeting will clarify things, but they learn it’s even more complex. The CDC is working on a totally separate data system, but it’s not operational and it won’t track who needs things like hospital supplies.   Amy Gleason: Everybody’s disjointed and didn’t actually know what everybody else did. It’s kind of this crazy environment where everybody’s trying to do the right thing and all running at a hundred miles an hour.   Jessica Malaty …: To add to the confusion, they all learn that there’s a third hospital tracking system getting data from about a thousand hospitals. It’s set up by another group at FEMA. So there’s all these different departments of the federal government working in silos, creating these new systems, and still, we don’t have reliable numbers on hospitalizations, cases and deaths. It’s all incomplete. One of the richest nations in the world is responding to a pandemic through emailed spreadsheets and pictures of napkins with coffee stains. This is not a coordinated response.   Amy Gleason: You hear about people coming back from battles or major catastrophes, an earthquake or a tsunami or something, and they have that kind of haunting thing, and I have that. I think I probably always will. I would try to go to sleep, and that’s all you could think about is how many people are dying right now of this thing and what could I do to stop that? You’d hear the hospital people calling, crying on the phone, and you can’t kind of shake that stuff. I felt the weight. I’m sure everybody working on it felt the weight   Al Letson: Without a central source of information, how will the nation’s leaders track the spread of the coronavirus?   Speaker 47: When we actually looked inside the federal government response around data, you were just sort of like, aren’t there any people in here? What is happening here? We are building data services out of sunflower seeds and Big League Chew. Where are the people?   Al Letson: Next up, the COVID tracking project becomes the main source of data for the federal government.   Speaker 48: We’re literally getting emails from the Army Corps of Engineers telling us they’re planning where to put their field hospitals based on this data.   Speaker 49: And it became clear in that conversation that they were relying on our numbers. I felt so physically sick after each of those realizations.   Al Letson: That’s after short break. You’re listening to Reveal.   Al Letson: From the Center for Investigative Reporting and PRX, this is Reveal. I’m Al Letson, and today we are revisiting a series we originally aired in the spring of 2023 about the US response to COVID-19. There’s a film that was referenced a lot during the beginning of the pandemic, Contagion.   Speaker 50: You ever seen anything like this before?   Speaker 51: No, and it’s still changing. It’s figuring us out faster than we’re figuring it out.   Al Letson: If you haven’t seen it, the movie follows the spread of a highly contagious and deadly respiratory virus.   Speaker 50: So we have a novel virus with a mortality rate in the low 20s, no treatment protocol, and no vaccine at this time.   Speaker 51: That is correct.   Al Letson: The film is full of eerie parallels to the COVID pandemic. Infectious disease expert Jessica Malaty Rivera worked as a consultant on Contagion, and she says there’s one part of the film that always stuck with her. Here’s Jessica.   Jessica Malaty …: There’s a line in the movie that we’ve now seen play out with COVID in real time. In the scene, actor Laurence Fishburne is playing a CDC epidemiologist. He’s sitting in a TV news studio being interviewed about the deadly virus, and he’s asked a seemingly simple question.   Speaker 52: Can you tell us to date how many people have died from this virus?   Laurence Fishbu…: Very difficult. We’re still working on confirming that number. There are 50 different states in this country which means there are 50 different health departments followed by 50 different protocols.   Jessica Malaty …: Then Fishburne’s character shrugs. It’s a nothing-I-can-do-about-it kind of shrug. That moment in Contagion captured one of the biggest issues the CDC faced in collecting COVID data. We needed the most up-to-date numbers, but the CDC couldn’t provide them because the agency was dealing with 50 different states.   Laurence Fishbu…: 50 different states in this country.   Jessica Malaty …: 50 different health departments.   Laurence Fishbu…: 50 different health departments.   Jessica Malaty …: 50 different protocols.   Laurence Fishbu…: 50 different protocols.   Jessica Malaty …: The US Constitution makes it clear that states are in charge of public health. State governments, and not the CDC, have the primary authority to control the spread of dangerous diseases within their jurisdictions.     When COVID hit, the federal government had no system set up to get COVID data from each state. Instead, the CDC said, “If you want data, go to the States. They have the most up-to-date information.” Essentially, the CDC told the American public, “You figure it out.” And some of us did. Starting in the spring of 2020, volunteers stepped up to gather data from every state and territory in the nation and share it every single day. It was called the COVID Tracking Project. I was one of those volunteers, and hundreds of people like me across the nation signed up to help.   Alexis Madrigal: There was so much volunteer energy, and we were putting in 100% commitment to making this thing happen.   Jessica Malaty …: That’s reporter Alexis Madrigal. He’s one of the co-founders of COVID Tracking Project. Data scientist Jeff Hammerbacher is another co-founder.   Jeff Hammerbach…: Before you knew it, we had competent people running entire swaths of projects that kind of really organically formed.   Alexis Madrigal: And we started running data shifts three times a day.   Jeff Hammerbach…: And I think it was Amanda French-   Amanda French: Hello.   Jeff Hammerbach…: Just out of nowhere, Amanda just stepped up.   Amanda French: Okay, so my name is Amanda French.   Jeff Hammerbach…: And created this incredibly structured and rigorous recruitment and training effort.   Jessica Malaty …: The first thing people do when they join the project is to learn how to gather the data. Amanda French is a project lead who trains other volunteers. This is from one of her training sessions.   Amanda French: So the first thing you’ll do, and it says this in the data entry instructions, you show up for a shift.   Alexis Madrigal: We would go through all the states.   Amanda French: All of the states and territories, which is 56 items.   Alexis Madrigal: We would update all the numbers.   Jessica Malaty …: Volunteers would click on a state website.   Amanda French: For Alaska, this is a link that goes through the Alaska Department of Health.   Jessica Malaty …: Look on a page for COVID cases, deaths, basically any of the COVID data.   Amanda French: Open this page and get the data from it.   Jessica Malaty …: There’s no standard way to report COVID data. Every state does it differently.   Amanda French: A lot of the data that we capture is spread out across multiple pages, government Twitter accounts, press conferences.   Jessica Malaty …: Not all states put data on their websites.   Speaker 53: Good afternoon everyone.   Speaker 54: Hi, good afternoon.   Speaker 55: Hello, everyone.   Speaker 56: Thank you very much for tuning in.   Jessica Malaty …: So volunteers watched hours of press conferences.   Speaker 57: This press conference is a vital tool for all of us to get through the crisis.   Speaker 58: What I asked you to do Minnesota, and you’ve done in a spectacular, very Minnesota manner is to buy us time.   Speaker 59: This situation is hard for any of us to believe. It’s like we’re all lost in a movie that we can’t relate to in any way.   Jessica Malaty …: And they would listen for the day’s COVID data.   Speaker 60: 335 cases of COVID here in Arkansas.   Speaker 61: 604 cases.   Speaker 62: We have now 76 cases in our state.   Speaker 63: Of COVID-19 in Virginia.   Jessica Malaty …: They sometimes watched up to 40 a day. There was barely enough time to listen before the data was published by 7 P.M. Eastern.   Speaker 64: Hospitalizations are at 48.   Speaker 65: We have 17 who are on ventilators.   Speaker 66: We have a total of 14 deaths,   Speaker 67: 31 deaths.   Amanda French: There comes a time when you begin to realize that you really are tracking deaths and people on ventilators and things like that. I actually always choke up when I talk about this, when I start to realize that this is not just a data project. This is a project about human data.   Jessica Malaty …: Every day, we’d tally up the number of tests, cases, people hospitalized, and deaths from every state and territory in the U.S. We’d put it all into a Google spreadsheet. It took about 20 people, three or four hours to do it. Alexis ran most of these data entry shifts.   Alexis Madrigal: And I would get done, and I kid you not, my armpits would be like high school kid with anxiety disorder, just soaked to my waist. If a dog smelled you during those things, they would just eat you right away. They’re just like, “You’re terrified.” You could just smell the fear. The fear mostly came from this. We had a bunch of people we didn’t know. We had complex data sets that we were merging into one, and we cared so much about getting it right.   Jessica Malaty …: Ryan Panchadsaram is a COVID Tracking Project volunteer. He was Obama’s Deputy Chief Technology Officer, and he knows some people working on the response within the White House. Near the end of March, Ryan sends out an email. Alexis is on it, so is Amy Gleason.   Amy Gleason: I first met Alexis by phone or by Zoom in March.   Jessica Malaty …: Amy’s trying to get any data she can about COVID for her boss, Dr. Deborah Birx, and some of her colleagues have been relying on data from the COVID Tracking Project, but even though the White House is desperate for good data, Amy is wary of talking to the COVID Tracking Project at the Atlantic. She can’t tell if it’s a journalism project or something else.   Amy Gleason: It was a little confusing because the Atlantic name was there, but also COVID Tracking, and they seemed a little bit at odds with exposing things that were happening and also trying to help.   Jessica Malaty …: There’s skepticism on both sides.   Alexis Madrigal: I had no trust in them up to that point. I basically felt like they’re more likely to be politically influenced than the CDC people.   Jessica Malaty …: Alexis thinks that the CDC is being suppressed, as in, they’re not allowed to say what the real case and death numbers are.   Alexis Madrigal: A lot of our contacts with the federal government felt very fraught and kind of dangerous for them and for us.   Amy Gleason: I was very careful talking to Alexis because I didn’t want to be stepping over any lines.   Jessica Malaty …: Some of Amy’s colleagues from the White House are trying to figure out why their data isn’t matching up with the COVID Tracking Project data, so they all get on the phone together.   Alexis Madrigal: They were trying to figure out why their numbers were not matching up with ours.   Jessica Malaty …: Alexis is on the call and so is COVID Tracking Project co-founder Erin Kissane. Amy’s team is asking questions about how the COVID Tracking Project gets their data and puts it together. The conversation really rattles Alexis and Erin.   Erin Kissane: It became clear in that conversation they were relying on our numbers. I felt so physically sick after each of those realizations.   Jessica Malaty …: What we learned is that the CDC wasn’t being forced to hide good data, they simply didn’t have it.   Erin Kissane: I think the term is moral injury. It’s really hard to deal with a sort of systemic betrayal by the organizations whose job it is to keep everyone safe.   Jessica Malaty …: The U.S. government seems to be relying on COVID Tracking Project data on a daily basis, and because of that, this work will last longer than anyone expected.   Alexis Madrigal: We’ll get going in a little bit. California put out some numbers, and as soon as I finish doing that and Tweet it, then-   Jessica Malaty …: The next day they hold the project’s first all-hands meeting on Zoom. Alexis is finishing up the shift as it starts.   Alexis Madrigal: Give people one more minute, and then we’ll get going.   Jessica Malaty …: Before this, people had been working together on Slack across time zones. Almost everyone is seeing each other for the first time.   Alexis Madrigal: Don’t worry if you don’t have your video on. I know, like me, probably everyone else is sitting there in their sweatpants.   Jessica Malaty …: There’s around 50 people on the Zoom. The COVID Tracking Project’s been going for a little over three weeks now. It’s turned into a full-time job for a lot of folks including Jeff Hammerbacher. He knows how stressful the work has been on the volunteers.   Jeff Hammerbach…: Alexis and I have tremendous battle scars from when we messed up, and there were like a thousand times less people looking at the data. Now, we’re literally getting emails from the Army Corps of Engineers telling us they’re planning where to put their field hospitals based on this data. We got that email today.   Jessica Malaty …: Alexis pulls up a slideshow that shows how widely the project is being used by news outlets. His mom has been keeping a spreadsheet.   Jeff Hammerbach…: We know that we’re providing it to many, many, many newsrooms. Everybody from the New York Times to local places like the San Antonio Express News.   Jessica Malaty …: Then Alexis drops what he and Erin have just learned.   Alexis Madrigal: We know that we’re providing it to sources inside government. For the first few days of this project, I think we hoped the cavalry was arriving. There’s no cavalry, there’s nobody there. Every indication we have is that no one is coming to take this over for us.   Jessica Malaty …: People are exhausted. Some of the most active volunteers have already burned out and left the project. Erin Kissane urges everyone to take care of themselves.   Erin Kissane: It’s super important for everybody here to know and really believe that when you need to tap out, you tap out. You are first. The humans on the project come first.   Alexis Madrigal: Zoom is telling me we’re done, and any more questions you can put them in the Slack.   Jessica Malaty …: Zoom’s free 40 minutes runs out. By this meeting, the COVID Tracking Project had recorded more than a thousand deaths. 10 days later, it would be nearly 10,000. Over the next year, we would document more than half a million deaths in America.   Al Letson: Next week on the COVID Tracking Project Part 3, Americans find ways to live through a national shutdown.   Speaker 68: I’m going to need somebody on.   Al Letson: But without data and facts, it gets harder to know what to believe about COVID.   Speaker 69: I’m going to treat this fruit. I’m going to dump it in some soapy water here, disinfecting more liberally.   Al Letson: And without good data, it’s also hard to know who’s most at risk.   Speaker 70: People wanted to believe the myth that COVID was the great equalizer and that race didn’t matter, just as I think people want to believe that myth in general.   Al Letson: We’ll tell you about the day the CDC finally starts releasing data and what that means for volunteers at the COVID Tracking Project.   Erin Kissane: That data showed up, and I saw it had come in, walked outside my front door, and I fainted like a Victorian sensationalist novel character. I walked outside. I didn’t fall down, but my blood pressure just went away, and I had to lie down on the sidewalk. The physical relief just hit me in the body that we were going to get to put this down.   Al Letson: And we’ll talk to the former director of the CDC.   Speaker 71: We’re about 60,000 public health workers in deficit. Our laboratory infrastructure across the nation has been under-invested in, and our data systems have been under-invested in. You can order a coffee by a QR code, but we were still at CDC getting results by fax from over 3000 different jurisdictions.   Al Letson: That’s next time on Reveal.     Our lead producers for this week’s show are Artis Curiskis and Kara Oehler. Michael I Schiller edited the show. Jessica Malaty Rivera is the series host.     Thanks to production assistants, Max Maldonado, Kori Suzuki, and Aarushi Sahejpal. Thanks also to Paul Landcour and Tim Olson at KQED Public Radio, where today’s episode was recorded.     This series was funded in part by Tableau from Salesforce.     Nikki Frick is our fact checker. Victoria Baranetsky is our general counsel. Our production managers are Steven Rascon and Zulema Cobb.     Score and sound design by the dynamic duo, Jay Breezy, Mr. Jim Briggs and Fernando, my man, yo, Arruda. They had help from Kathryn Styer Martinez and Aisha Wallace-Palomares.     Our interim executive producers are Brett Myers and Taki Telonidis.     Artist and Kara co-executive produced and reported this series.     Our theme music is by Kamarado Lightning.     Support for Reveal is provided by the Reva and David Logan Foundation, the John D. and Catherine T. MacArthur Foundation, the Jonathan Logan Family Foundation, the Robert Wood Johnson Foundation, the Park Foundation, the Schmidt Family Foundation, and the Hellman Foundation.     Support for Reveal is also provided by listeners like You. Reveal is a co-production of the Center for Investigative Reporting and PRX.     I’m Al Letson, and remember, there is always more to the story.