Title: How Trump's Changes to Data at Federal Agencies Will Affect Our Health

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Tiffany Hanssen: It's the Brian Lehrer Show. Welcome back, everybody. I'm Tiffany Hanssen filling in for Brian, who is off for a few days. The fate of Robert F. Kennedy Jr's nomination to lead the Health and Human Services Department is still pending, though it's likely he'll be confirmed. The Trump administration issued a memo last week to the nation's top public health agencies, instructing them all to end "programs that use taxpayer money to promote gender ideology".

These agencies were also instructed to disable any related information from their websites. Some visitors to those sites have since seen error messages when looking for guidance or data. Right now at the CDC's website, for example, if you log on, there's a little yellow banner at the top of the homepage that says CDC's website is being modified to comply with President Trump's executive orders. The result of those modifications is that now there is less communication and less data available for anyone looking for guidance.

With us to talk about what reports and data have disappeared from these websites and what that might mean for your health, we are joined by Katelyn Jetelina, epidemiologist, data scientist, and author of a newsletter, Your Local Epidemiologist. Katelyn, welcome.

Katelyn Jetelina: Thank you for having me.

Tiffany Hanssen: Let's just start by talking about what's missing in terms of information, and I'm going to break this down by groups. Do we know what's missing as it relates to kids or LGBTQ kids specifically at this point?

Katelyn Jetelina: It's challenging to know. Without clear explanations or any sort of transparency, it's really hard to assess what's happening, what's missing, and honestly, what also may just be manipulated in the data. What we do know is that a lot of these changes that are happening at HHS, which includes CDC, is at the heart of these sweeping executive orders, particularly two that requires removing so-called woke language from all communications and data sets.

That includes a long list, but some of that is the word gender, the word transgender, pregnant person, pregnant people, LGBTQ, and so on and so forth. While some of this data and the communications have been brought back online, we're starting to see the veil lift. A lot of this language has certainly changed on the website.

Tiffany Hanssen: Based on that list alone, some of these websites would automatically have to come down. If it's a survey, for example, or a page dedicated to supporting LGBTQ youth, then just by definition of the words involved in that, they would have to come down.

Katelyn Jetelina: Yes. This is a massive directive. CDC for example, was only given two days. It's a draconian task because federal agencies just can't Control-F their websites and swap out words like pregnant person for pregnant woman in thousands and thousands of documents. Similarly, like you mentioned, changing data variables from gender to sex isn't always a simple fix.

It takes time and actually can be a really logistical nightmare because researchers depend on clean, unaltered data sets to improve Americans' health meaningfully. A lot of these data sets, for example, a data set called the Youth Risk Behavior Behavior Survey, it's a national survey that's been running since 1990 and it tracks everything from chronic diseases to bullying to mental health. It remains down and it's remained offline. It's likely because it includes questions about gender identity and sexuality.

Changing a column header, for example, could break decades of continuity, really skewing our ability to detect trends and protect Americans' health.

Tiffany Hanssen: Let's talk about something-- I don't know, maybe this doesn't have the language around it that would cause it to immediately be taken down, but I'm referring to vaccines. The Washington Post reported that a page for recommended vaccines was temporarily unavailable. Then it came back apparently and that had a mention of the MPOX vaccine. Is it touching other areas just beyond the LGBTQ maybe diversity, equity, inclusion type language that is being scrubbed from these websites? Sites relating to vaccines is also being affected.

Katelyn Jetelina: Yes, you're right. This is wide-sweeping and it's unclear why a lot of these websites are going down, but even, like you mentioned, MPOX is mainly-- Those at high risk are men that have sex with men. We can't change the truth of that as well as for example DTaP or Vaccines for pregnant people, and so they had to take that language down. I think it's really stunning that the fallout from removing data and guidelines wasn't anticipated.

You're right, these vaccine pages were back up quickly after this blackout. This is probably because Health and Human Services or this new administration freaked out overnight because it created additional noise around the RFK nomination. There's just a lot of lack of forethought behind these decisions as well.1

Tiffany Hanssen: I want to get to what might be missing from data, but just one other question, following up on the vaccine thing and that is outbreaks, for example, the ongoing bird flu outbreak, New York saw a surge in the norovirus infections in the city. Are we seeing any not necessarily data missing from that, but information for people who might be wondering like, "How is the bird flu affecting--" and New Yorkers saying, "How much norovirus is around?"

Katelyn Jetelina: Yes, you're right. There has been a two-week pause on communications from federal agencies and that includes CDC. It was supposed to be lifted over the weekend. It wasn't. We continue to get a small drip of information coming from CDC, which is a problem because this is the health warning system of the United States, and the longer we don't have it, the greater biosecurity risk, like around H5N1. CDC is updating their data on their website, for example--

Tiffany Hanssen: I'm sorry, H5N1, that's the bird flu thing?

Katelyn Jetelina: Oh, I'm sorry. Bird flu, yes. That's bird flu. CDC is updating their data on their website, for example, if more humans are getting infected. The problem is that they're not updating a lot of the science. There's this publication called MMWR which is a science publication on outbreaks. We know that there's three scientific publications that have been put on hold that has direct implications for veterinarians, for example, who are on the front lines working this H5N1 outbreak.

Again, the longer that this hold takes, the greater probability of risk. I do want to be very clear though that in New York, for example, data is decentralized, it comes from the bottom up in the United States. This was a problem during, for example, COVID, where we really needed a national picture, but it's becoming a benefit when our federal government is in disarray. There's no indications that for example in New York, any of this data disruption is impacting New Yorkers.

Again, there may be long-term implications for communities, including New Yorkers, because federal government plays a vital role in health guidance, rare disease knowledge, coordination, technical expertise, and finding health gaps.

Tiffany Hanssen: Katelyn, to your point there about it being disruptive for New Yorkers, we have a text from a listener that says, "I teach undergraduate public health classes and my students are not able to access basic information about child health, mental health, infectious disease, the opioid epidemic, et cetera. This is years of work that is no longer available for people doing work related to both public health and individuals' health. It puts all Americans at risk."

Listeners, do you have an opinion on this and how the disappearance of this information might be affecting you and the health of those around you? You can call us, you can text us. 212-433-9692, 212-433-WNYC. Katelyn, that listener there really gets at the heart of what I wanted to go to next, which is something you've alluded to it's not just information. We're talking also about data. I want to get clear about the difference between just basic information, like, "I don't know what bird flu is, so I'm going to look it up on the website," and for example, maybe parts of that are missing.

How does that apply to the data that might be missing? Where are we seeing those gaps and how is that data potentially being manipulated to fit in with some of these new executive orders?

Katelyn Jetelina: The truth is right now we just don't know. I think that's what has caused-- We don't know how long this pause is going to take. We don't know what the data is going to look like when the veil rises after all of these pauses. We don't know if all of these data sets are ever going to come back. There's just zero transparency and communication around this. This is why a lot of independent groups like, for example, Harvard Data Vault and journalists and grassroots effort have archived all of these key data sets before these executive order changes came in to provide a reference point of if any altercations occurred.

The team at my newsletter called Your Local Epidemiologist actually has been monitoring real-time data shifts that they're making through a tracking system that was created. In the past four days, there's been about 40,000 additions and about 39,000 deletions that have occurred on the CDC website around data and communication. Mass column removals, renamings, reappearance. All of them seem to be aligned with the executive order scope, but these are thousands of changes of code, and really a full analysis is going to be incredibly useful going forward to understand the implications.

Tiffany Hanssen: You said there was work happening prior to this.

Katelyn Jetelina: No, once people heard that CDC was starting to scrub their data, people got into-- There's Internet archive pages that people went to and just downloaded.

Tiffany Hanssen: I wonder if you have an opinion as to why perhaps some scientists didn't see this coming. Maybe they did. Maybe we just don't know.

Katelyn Jetelina: This language change is actually not new. We saw this during the first Trump administration about words they didn't want used, like equity, for example. There's always different priorities when a new administration comes in, regardless of who that administration is. The difference right now is how quickly changes are happening and the reach that they are making these changes. Like you said, these are data sets we've used for decades. They are tax-paid data sets. It is quite incredible to watch all of this unfold. I don't know if any of us in this space really anticipated the destruction that was going to happen.

Tiffany Hanssen: Speaking of your colleagues in the epidemiological space, have you heard from them? What are they saying?

Katelyn Jetelina: A lot of us are very concerned. It's not just this data. People are losing their jobs and humanitarian aid. All of their grants are being paused. All of this matters because we're trying to improve the health of Americans. I think one of the biggest concerns a lot of my colleagues have is twofold, and I share them a lot is that even if all of this data and communications come back online and there are very few changes and they're in line with his executive order, one, all of these acts have already damaged many people's trust in these institutions' data like CDC.

We're just going to see more and more distrust and that's not going to help the health of Americans. The second thing that we're incredibly concerned about is Americans like LGBTQ are already getting left behind with these data changes. Data specificity and compassionate communication are critical for understanding how environment and genetics and our complicated world interact with each other. It's a crucial in understanding whether people are being served by health systems.

This is what public health means, and people are being left behind. Even if we change a name and a column, that doesn't mean they no longer exist in our community. It's going to be incredibly challenging moving forward and helping them every step of the way.

Tiffany Hanssen: Let's talk about the scientists for a minute. Data is still being collected. Scientists are still working, by and large, right?

Katelyn Jetelina: That's right. Data, again, comes mostly from local and state levels. CDC is mostly in charge of national surveys and data sets. Those haven't been happening over the past two weeks. It's not clear how and when those will continue going forward, but diseases don't stop so our work isn't stopping, it's just becoming a whole lot harder.

Tiffany Hanssen: The work may not be stopping, but I would imagine that scientists refer to past data while collecting current data. I'm just wondering if you can speak to the challenges scientists might be facing when some of this data does go missing for a while. Even if it does come back, then I can imagine it poses all sorts of problems from the scientific perspective.

Katelyn Jetelina: Yes, that's right. Data is like gold. Data and communication must remain untainted to retain their value, to understand how we best approach outbreaks and health challenges for Americans instead of just throwing spaghetti at the wall to see what works. A lot of this has implications, for example, government efficiency that in order to better track diseases, we need data, and we certainly cannot be walking on eggshells. We need to be able to communicate with each other and partners in the community.

I think there's a massive push for transparency and continuing to advocate for data integrity because public health isn't just about numbers and words. It's about lives.

Tiffany Hanssen: You mentioned the grassroots effort by individuals, by groups to save data using some of these tools like the Wayback Machine. I don't know how much you are in tune with the technology on all of this, but my first thought is, when I go back and look at an archived page, for example, I can see how the page looked, but I can't click through. I can't get to whatever link used to be there. I can imagine that even the effort to save some of these pages as they existed in the past, while good, may not get at the nut of all of the data behind it.

Katelyn Jetelina: There's a lot of data nerds behind all of this. This is a place that I'm not concerned. I'm very confident we have a strong archive of all of the data before the scrubbing began. I truly am not concerned about that. I think that we have a really good handle on it. What I am concerned going forward is what the implications of all of this are, whether we can trust CDC with this national data, what it's going to look like going forward, who's going fill these gaps, and if we can still be responsive to the needs on the ground.

Tiffany Hanssen: Kaitlyn, I want to bring a listener into the conversation with us. Joy in Manhattan, you have a question about data.

Joy: Hello.

Tiffany Hanssen: Hi.

Joy: My question was this. They've taken the data down or just blocked access to them. Are you concerned that they are actually going in and changing values in the databases so that it will look like we have a different historical trend on COVID or Cancer or the next census? We will just have to assume the data are all wrong, or they'll change the 2020 census so that the comparisons of 2030, when it happens, will be different, things like that, as opposed to changing references to DEI but not actually changing the underlying numbers.

Tiffany Hanssen: Good question, Joy. Katelyn, going in and changing a 23 to a 12 is a different kettle of fish, as they say.

Katelyn Jetelina: I think it's a really good point, Joy, and it is certainly something a lot of us epidemiologists are concerned about. We haven't seen any evidence of this happening yet, but by God, we are keeping a really close eye on the scientific integrity of this. I don't think it's a far-reaching scenario where, for example, we see data change that transgender youth don't have mental health challenges, and when we know that they do.

If data changes extend beyond the executive order scope, beyond just word changes, whatever that means, as well as if scientists are pressured to alter evidence and numbers, we have a huge problem. I have not seen that yet, I want to be clear, but we are keeping a very close eye on it when these curtains lift. That's why these archives of data that the grassroots have put together are so important to have as a reference point.

Tiffany Hanssen: Katelyn, you have a newsletter that's called Your Local Epidemiologist. One of the things that you address in your newsletter is the transition here and the way it was handled between administrations. I'm curious what you think about what makes it so unusual about-- Obviously, there's a lot that's unusual here, but what has made it, I guess, challenging?

Katelyn Jetelina: I keep wondering this, why is this such a mess? I think the situation has been spiraling for a few reasons. One, there was no transition team between administrations.

Tiffany Hanssen: Specifically at these health organizations like the CDC, the FDA, you mean?

Katelyn Jetelina: Yes, correct. Typically you have about two months before the new administration comes on and people are sitting in chairs together, looking through everything so everyone's up to date on everything that's going on in health in the United States, and these processes and updates just never happened. This is happening now, resulting in really freezing at the moment. Two, I think there's a lack of capacity under this new administration.

HHS is running with a skeleton crew. Downsizing government sounds good in theory, but capacity is a serious issue, resulting in a bottleneck of approvals. Third, loyalty over logic. Decision-making seems to be driven by political allegiance rather than really the public health consequences. Then, of course, there's always the potential for something worse. There's always the potential possibility of more deliberate interfaces at play. I think that these four factors are really contributing to a storm that we're seeing play out in real-time.

Tiffany Hanssen: Katelyn, before we let you go, last question. To your point, it feels very chaotic. It is a very chaotic time for a lot of scientists and people working at the CDC, at the FDA, at Health and Human Services writ large. We have endured very complicated, chaotic public health crises in our recent past. I'm wondering if there's something, particularly from the response to the COVID pandemic and what was happening around then. Is there something that we learned from that that we can take now and put into action?

Katelyn Jetelina: There's a lot we learned during COVID. I think one of the challenges right now is how exhausted public health and scientists are that we are coming off the heels of the biggest public health emergency in the past century, and we're tired. While we're tired and trying to pick ourselves up from the dirt, there are a lot of lessons. One of them is listening to people rather than hearing, a lot of it is approaching all of these challenges with a level of humility.

I think the other really big challenge right now is realizing that some people's American values come directly in concert or against public health and what we do to protect communities. It's going to be a really trying time, but I do have hope and certainly see a lot of camaraderie and change happening from on the ground.

Tiffany Hanssen: Hope is a good place to leave it. Katelyn Jetelina is an epidemiologist, data scientist, and author of the newsletter, Your Local Epidemiologist. Katelyn, thanks for your time.

Katelyn Jetelina: Thank you for having me.

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