‘Chaotic and deeply frightening’: Once a global gold standard, U.S. government health guidance is falling apart

Weeks after President Trump took office, multiple government webpages referencing gender and sexual orientation abruptly disappeared from the internet.

Many returned after a February court order. But they came with an unusual addition: a disclaimer from the Department of Health and Human Services denying facts provided by its own agencies.

“Any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female,” reads a statement now appended to several government webpages, including some discussing HIV, civil rights protections and healthcare for transgender people. “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”

Once a global leader in public health guidance, the U.S. government is now embarking on the unusual project of denying or deleting once-public information provided by its own researchers.

The U.S. Global Change Research Program’s entire website went dark Monday, taking with it an extensive report on the health effects of climate change whose authors included employees of the Centers for Disease Control and Prevention, the Occupational Safety and Health Administration and other government agencies.

Dozens of research databases maintained by the National Institutes of Health on topics such cancer and Alzheimer’s disease now display a warning that they are “under review for potential modification in compliance with Administration directives.”

Some federal sites have added new pages that at times contradict evidence-based guidance posted on the same site. CDC.gov currently hosts both a recent presentation by vaccine skeptic Lyn Redwood about the dangers of the preservative thimerosal, as well as a fact sheet published in December debunking many of the incorrect statements about thimerosal that anti-vaccine campaigners have advanced. (The site also notes that thimerosal was removed from U.S. childhood vaccines in 2001.)

The consequence, physicians and child health advocates said this week, is having fewer tools to help healthcare providers and the public make informed decisions, further eroding the public’s trust in science.

“Use whatever analogy you want to use — this is a five-alarm fire,” said Dr. Sean O’Leary, a pediatric infectious-disease specialist who chairs the American Academy of Pediatrics’ infectious-disease committee.

“One day the information is there, and the next day it’s gone. And it’s being driven purely by politics and not by science. It’s dystopian, frankly,” O’Leary said. “The CDC is a model for the world in terms of what they do for the U.S. population, and that is being harmed in a very profound way.”

O’Leary was one of several physicians The Times spoke with who stressed that the contradictory messages emerging from U.S. government agencies were not a sign of a fracturing consensus among public health professionals, but of the administration’s turn away from those professionals’ expertise.

The nation’s various scientific societies, professional groups and medical associations “are all in alignment,” O’Leary said. “There is no disagreement among us that what is happening is chaotic and deeply frightening for the American people.”

For the first time since the 1990s, the American Academy of Pediatrics no longer endorses the CDC’s childhood vaccination schedule. Visitors to the academy site are directed not to the CDC’s most recent guidelines, which no longer suggest outright that children get the COVID-19 vaccine, but to a version published in November that retains the recommendation that it be given only to children 6 months and older.

After the CDC’s Advisory Committee on Immunization Practices voted last month to recommend only thimerosal-free flu shots and drop COVID vaccine recommendations for healthy pregnant people without the scientific input the group typically receives before such decisions, both the Society for Maternal-Fetal Medicine and the American College of Obstetricians and Gynecologists issued statements denouncing the committee’s recommendations. (Roughly 96% of the flu shots administered last year did not contain thimerosal, according to the CDC.)

The CDC now deems the COVID shot a “shared clinical decision-making vaccination” for children. Unlike routine or risk-based vaccine recommendations, this designation is “individually based and informed by a decision process between the health care provider and the patient or parent/guardian,” according to CDC.gov.

But by depleting and muddying the information it makes publicly available, the administration is depriving parents of the evidence-based data they need to make responsible decisions, said Bruce Lesley, president of the child health-advocacy group First Focus on Children.

“We all should rely on some sort of expertise and protections,” Lesley said. “There’s no way to be able to put that burden on parents and to expect that it’s just going to be all fine.”

The CDC website in particular has long been a resource that physicians and other healthcare providers rely on to stay abreast of evidence-based recommendations for treatment and emerging health trends around the country, doctors said.

“What all this is doing is causing a great deal of confusion, and not just for our families and our patients, but also for our providers and our doctors,” said Dr. Eric Ball, an Orange County pediatrician and the American Academy of Pediatrics’ California chair. “We rely on accurate information from our public health sources so that we can help best take care of our patients, and when we can’t trust those sources, that makes it more difficult for us to do our jobs and endangers the health of our communities.”

Since Trump took office, several independent efforts have sprung up to archive what data can be saved from government websites before its withdrawn or deleted, such as the Data Rescue Project and RestoredCDC.org.

But the patchwork of alternatives can’t replace what CDC.gov has long been for the U.S. public — a single-stop clearinghouse for evidence-based information presented in plain language, said Dr. Tina Tan, a professor of pediatrics at Northwestern University’s Feinberg School of Medicine and the president of the Infectious Diseases Society of America.

“The question now is who do you trust, and where do you get trusted information? And that’s a major issue,” Tan said. “The American public needs to understand that all these changes are going to have some type of impact on them.”