It’s all about the (lack of) trust.

Well, it has been a WEEK. I’ve been planning to write a post for about a month now about trust in public health. How did we get to a place where so many Americans don’t trust public health experts (even before January 2020)? And especially since January 2020, how do people who are not public health experts know who to trust when it comes to public health information? But it felt like such a big topic that I kept getting stuck.

That changed this last week.

On Wednesday, I started receiving messages from friends and colleagues asking me if I had seen the CDC website on vaccines and autism. Until Wednesday, that webpage said “studies have shown no link between receiving vaccines and developing autism spectrum disorder.” It cited a National Academy of Medicine review of scientific papers from 2012, and a separate CDC study on this issue from 2013. But now, the website has changed:

Shortly after the change was made, Paul Offit, a pediatrician and virologist who directs the Vaccine Education Center at Children’s Hospital of Philadelphia (the world-renowned CHOP), wrote a post on his Substack entitled “CDC 1946-2025: R.I.P.”. Katelyn Jetelina (Your Local Epidemiologist) updated her Substack with a new post called One of CDC’s final blows. And what it means for you. One of her subheaders declares, “Now, part of CDC [has] flatlined.” Both of these experts are incredible communicators, and they’re not prone to hyperbole. Many people are wondering now whether it’s possible for CDC to survive this.

The Centers for Disease Control and Prevention. The place where Kate Winslet’s character worked in Contagion (and yes, in real life is the place that deploys “disease detectives” and coordinates containment strategies during deadly outbreaks in the US and abroad). It’s also the place that:

• Runs our national disease surveillance systems, which track infectious and chronic diseases across the country so we understand where our biggest risks are,

• Operates some of the world’s most advanced public health labs, providing diagnostic confirmation for rare or emerging pathogens, and tracking variants of new viruses through genomic sequencing,

• Oversees our national stockpiles of medications to protect us in the event of bioterrorism or a chemical or radiological exposure, and funds and trains state and local health departments on public health emergency preparedness,

• Coordinates our access to vaccines that keep us healthy, through development of vaccine recommendations, funding of immunization programs, and tracking of vaccine safety signals,

• Monitors and responds to hazards in the workplace, including workplace injuries, dangers of asbestos and silica exposure, and other toxic exposures,

• Funds the vast majority of public health efforts to prevent infectious and chronic diseases at the state and local level, including HIV, hepatitis B and C, mpox, heart disease, cancer, and diabetes, and

• Gathers data, funds research, and designs interventions to reduce deaths from motor vehicle accidents, firearm injuries, drug overdoses, child abuse, intimate partner violence, and suicide—including providing technical assistance to states for their work on these issues.

People are now wondering aloud whether the CDC can survive concerted efforts by the Trump administration and RFK Jr. to dismantle and undermine it as a scientific agency. If the CDC collapses and goes the way of USAID, all of these things that CDC does for all of us in the United States will be debilitated. This is not a drill.

Why is this website change such a big deal?

In case you didn’t know, the false claim that vaccines cause autism can be traced to a research article published in 1998 that was retracted way back in 2010. Now, scientific articles aren’t easily retracted. This only tends to happen when there are major errors in the methods, or a comprehensive investigation finds evidence of ethical violations and fraud. In this case it was the latter. Yet the impacts of this improper, unscientific paper have persisted for decades in anti-vaccine messaging, including that of RFK Jr, our current Secretary of Health and Human Services.

The actual scientific evidence is extremely clear that vaccines do not cause autism, and the CDC webpage now obviously suggests otherwise. This is horrifying, and it is intentional. How do I know?

1. In an interview with a reporter from the New York Times, RFK Jr. said so. He took credit for it, bragging that he “personally instructed” the CDC communications office to make the change. Just in case I need to say it again, RFK Jr. is not a scientist. He’s an environmental lawyer who has made millions of dollars by suing vaccine manufacturers for causing harm. He is personally, financially invested in creating the appearance of a real link between vaccines and injury or death.

2. It’s technically correct that “studies have not ruled out the possibility that infant vaccines cause autism,” as the website now claims. But this is because it’s literally impossible to rule out a possibility of something. That’s not how science works. Perhaps Paul Offit explained it best (bold emphasis mine): “Currently, 24 studies performed in 7 countries on 3 continents involving thousands of children and costing tens of millions of dollars have all found the same thing. Children who have received the MMR vaccine were not at greater risk of developing autism than those who didn’t receive it. Researchers could have done a hundred studies, or a thousand studies, or a million studies but that still wouldn’t have proven that it couldn’t happen. You can never prove never…If RFK Jr. wanted to be honest with the American public, he would make it clear on the CDC’s website that chicken nuggets also might cause autism, which has never been and will never be disproven.” (Think about it. The logic is exactly the same here. Don’t fall for what RFK Jr. is doing.)

3. Dr. Demetre Daskalakis, the former Director of the CDC’s National Center for Immunizations and Respiratory Diseases (e.g. the guy who oversaw our access to vaccines until he resigned in protest when Susan Monarez was ousted as CDC director), told Dr. Jeremy Faust of the Inside Medicine Substack that people at CDC “were completely blindsided by this [website] update.” There is a team of CDC scientists who’ve dedicated their careers to understanding the data and protecting the public’s health related to these issues—if they’re blindsided by a change like this on the website, it can only be politically motivated and not science-based. Taking it a step further, Dr. Daskalakis made it very clear: “The CDC cannot [any longer] be trusted as a source. It is a weapon.”

4. If you go to the actual CDC webpage, you might notice that the first header below the title still reads “Vaccines do not cause autism,” with an asterisk. Weird, right? The asterisk leads you to a footnote explaining that this language was not removed from the site due to an agreement with Senator Bill Cassidy (R-LA) that it remain on the CDC website. This was an explicit condition of him being the deciding vote that enabled RFK Jr. to become confirmed as HHS Secretary. It’s a shocker, I tell you, that they technically adhered to their agreement while giving Cassidy the middle finger with the entire rest of the webpage. He was hoodwinked. Which apparently everyone in the United States except Senator Cassidy saw coming. (Cassidy posted on X on Thursday that “What parents need to hear right now is vaccines for measles, polio, hepatitis B and other childhood diseases are safe and effective and will not cause autism. Any statement to the contrary is wrong, irresponsible, and actively makes Americans sicker.” With all due respect, sir, too little too late. I hope you are having a lot of trouble sleeping at night.)

As Your Local Epidemiologist wrote late last week, “This was political actors overriding science in a place where accuracy, integrity, credibility, transparency, and honesty literally saves lives.” In case this speaks to you differently, Dr. Marc Veldhoen—a well-known Dutch immunologist—wrote on Threads three days ago (again, bolding is mine), “The CDC pages have now been hijacked for state-sponsored disinformation. It is terrible to see this happening. This is ideology, unscientific, over facts, data and the scientific method.” This is language we use in the US to speak ill of countries like North Korea, Russia, or China. This is language people outside of the US are now using about our government. Why can’t most people seem to see this—see the severity of what’s happening here? What are we going to do about it?

Now who can we trust?

Perhaps the most important question at the moment is what the average American without a PhD in vaccinology or epidemiology or a medical degree should do to gather information and make the best possible decision about health-related issues. We all want to keep ourselves and our family members safe, and we can’t rely on the CDC to help us with that, at least for now. Forget RFK Jr. just for a second: CDC is now being directed by a person with no medical or public health training, who has still, two months after his appointment following Monarez’s firing, has never met with the leadership team at CDC. He’s also not sent a single email to staff since his first email to them on September 16. (I happened to be there at CDC then, and I can tell you that it did not go over well. At least one person described the main thrust of the email to the people still standing at CDC to be “You are terrible humans.” So maybe it’s good that he hasn’t tried to communicate further.) If you really want to ruin your day, you could look at extremely distressing X feed, which includes an odd focus on anti-aging research and worse, a hashtag he appears to have coined (#MorningMedicaidMugshot) where he posts “mugshots” of real people he labels as “illegal aliens” and claims have been stealing Americans’ health care. This is Jim O’Neill, the acting director of the United States Centers for Disease Control and Prevention, posting on his official social media account, @HHS_Jim. Are you proud? This is making America great again?

So we can’t trust the CDC anymore. There are madmen at the helm. What to do?

• You can read this brief from Canada that provides the real data demonstrating that vaccines do not cause autism, in an accessible way. This document was created for doctors and public health professionals to be able to talk to patients about this issue, but you don’t need a PhD to be able to read the summaries of the studies that tell us vaccines don’t cause autism. This is a good choice if you want to dive deep and “do your own research” on the research.

• You can read this really good report that Defend Public Health released in December about what the science does say about the risk factors for autism. Defend Public Health is a volunteer group of public health experts who have formed a coalition to resist and counter the dangerous health actions from the current administration. (I’m a part of the group and have been impressed with their commitment to vetting real scientific information and effectively communicating it to the public.)

• You can look to other scientific organizations not under the control of the federal government. A lot of them—including the American Academy of Pediatrics and the Infectious Diseases Society of America—have been doing a great job stepping into the void left by CDC since January, releasing guidance that’s actually based in science. Despite what RFK Jr. might be trying to tell you in a bit of absurd irony, these are not organizations that are bought by Big Pharma or otherwise stand to benefit from lying to you about scientific evidence that can keep you and your family healthy. The President of the American Academy of Pediatrics responded to the recent changes on the CDC website with a bold statement:

• You can find other health and science communicators you trust. Besides me, you can follow Your Local Epidemiologist (one of my faves) or any of the other people vetted by The Evidence Collective and recommended for this purpose.

The ramifications of a change like this on the CDC website are serious. They may argue that it’s technically correct, and that’s true, but it’s what Robin Cogan—who runs a great weekly blog called The Relentless School Nurse—calls “pretzel logic,” which is designed to create doubt where none belongs. As Cogan says, nurses “know the stakes. Even small drops in vaccination rates invite outbreaks of measles, whooping cough, and other preventable diseases.”

Last week I attended a webinar by the Association of Healthcare Journalists, where Dr. Dan Jernigan (formerly the head of the National Center for Emerging and Zoonotic Infectious Diseases, until he resigned after Susan Monarez’s firing along with Dr. Daskalakis), said that RFK Jr. was trying to undermine the CDC by “going from evidence-based decision-making to decision-based evidence making.” That’s exactly right, and it’s not what we should want from our health leaders or our scientists. (By the way, the webinar was outstanding, if you want to know more about what’s really gone down at CDC under RFK Jr. It’s engaging and worth a watch.)

Take a deep breath. Be cautious about anything the government-run agencies are saying about health, especially about vaccines, gender health, reproductive health, or environmental science. Look for other sources you can actually trust. Call your representatives in Congress, and continue insisting that they stand up and protect their constituents from this state-sponsored disinformation, which endangers all of our health.

A last note for my readers who are public health professionals:

We need to focus on rebuilding trust. We need people to know that we are not synonymous with these political shills who have co-opted our CDC (even if you are one of the fierce scientists still working there and doing your best to conduct actual science). We need to not be dismissive, and treat people who are ignorant of the scientific facts as if they are stupid. They are not stupid, and they need us to provide good information in ways they can hear it. Taking our frustrations out on them isn’t going to help.

If you haven’t already, I highly recommend reading this exceptional article by Jess Steir, modeling how we can talk to others and have a real impact.