Most of the medical community once looked to an influential federal vaccine panel for guidance on immunizations.
But after the discussions and recommendations from the Centers for Disease Control and Prevention vaccine panel veered from scientific consensus last week — and toward the vaccine-skeptical beliefs of Health and Human Services Secretary Robert F. Kennedy Jr. — many experts are looking elsewhere.
“It used to be that the CDC was the No. 1 public health agency in this world,” said Dr. Paul Offit, a vaccine expert at Children’s Hospital of Philadelphia. “That’s not true anymore.”
What was once a panel full of leading experts in epidemiology, vaccine research and statistics has been replaced by Kennedy, for the most part, with figures who have doubted core public health tenets and spread misinformation, according to Offit.
The Trump administration has recommended against a combined measles, mumps, rubella and chickenpox vaccine, discouraged covid-19 shots for healthy individuals and defunded research into the technology that can quickly produce new vaccines.
To varying degrees, these actions fly in the face of broadly held views in health care, prompting medical organizations to issue independent guidance and muddying the waters on how providers should prescribe and give treatment.
The Pennsylvania Department of Health on Monday, for instance, explicitly called on doctors to turn to the American Academy of Pediatrics, the American Academy of Family Physicians and the American College of Obstetricians and Gynecologists for vaccine guidance — not federal authorities.
“Those recommendations typically align with federal recommendations, but not entirely at this point,” Pennsylvania Health Secretary Dr. Debra Bogen told TribLive on Tuesday. “That is exactly the reason we put out our guidance: to try to guide people to trusted, evidence-based sources.”
‘It wasn’t good for anybody’s health’
Vaccines haven’t been the only area of interest for federal health officials.
On Monday, President Donald Trump connected Tylenol use during pregnancy to autism in children. He said the Food and Drug Administration would begin notifying doctors that acetaminophen, Tylenol’s active ingredient, “can be associated” with an increased risk of autism — despite not providing a reason for the new recommendation.
The announcement left some of the medical community aghast.
“It was the single most irresponsible and dangerous press conference regarding public health in presidential history,” Offit said. “It wasn’t good for anybody’s health.”
Researchers have repeatedly examined a possible link between Tylenol and autism and found an association, according to Devon Ramaeker, division director of maternal-fetal medicine at Allegheny Health Network’s Women’s Institute.
But that doesn’t mean the over-the-counter pain reliever causes developmental conditions, she said, noting that autism stems from a complex mix of genetic and environmental factors.
“We know that autism is likely a very complex diagnosis that has a lot of potential reasons it may occur,” she said. “And simplifying it down to a single cause, risk factor or exposure is oversimplifying the diagnosis.”
What could definitely lead to adverse outcomes, according to Ramaeker, is a pregnant woman deciding to “tough it out” when they have a fever, as Trump suggested, rather than taking Tylenol. Untreated fevers in pregnant women bring a higher risk of birth defects during the first trimester, including a spinal cord condition that can cause severe disability.
Offit put it this way: “All the data is on the side of fever is bad for you in the first trimester, and Tylenol doesn’t increase your incidence of autism.”
The reviews of Monday’s news conference weren’t all bad.
John Carosso, an autism specialist with multiple offices in Southwestern Pennsylvania, said Trump and Kennedy are right to frame rising autism diagnoses as a crisis.
“It’s such a tremendous travesty,” he said.
Where Carosso sees rising cases of autism, other medical experts see a more robust and inclusive diagnostic framework that better recognizes the condition in women and minority groups.
Carosso isn’t sure whether the Tylenol connection is legitimate.
Getting to the bottom of this will be a challenge, in his view, “because it comes from the Trump administration, (so) it’s going to be immediately refuted” by a large swath of medical experts.
‘United the medical and scientific community’
Dr. Amesh Adalja, a Pittsburgh-based infectious disease expert and senior scholar at the Johns Hopkins Center for Health Security, said he reads the data himself to determine what is going on in terms of vaccines.
“I would not trust anything that Kennedy has control over,” Adalja said.
That includes several key authorities, including the CDC, the National Institutes of Health and the FDA, all of which dictate the country’s health guidelines and policies.
Some states are trying to fill the void as confidence in federal guidance wanes.
Pennsylvania announced Thursday it had joined Connecticut, Maine, Massachusetts, New Jersey, New York State, Rhode Island and New York City to launch the Northeast Public Health Collaborative.
The coalition will “protect the health, safety and well-being of all residents by providing information based on science, data, and evidence, while working to ensure equitable access to vaccines, medications and services,” according to a news release for the state.
The organization held its first meeting in August, where it started identifying opportunities to work together on public health emergency preparedness and response as well as vaccine schedules.
Offit called Monday’s news conference a jolt for some within the medical establishment.
“It’s really united the medical and scientific community,” Offit said.
Confusion and repercussions
Shifting guidelines have left patients and doctors with conflicting information.
“Clearly, the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, the Infectious Disease Society of America and states have created their own expert advisory bodies to make recommendations that they think are based on good data and are therefore good practices — the problem is it’s become fragmented. So people are unclear what exactly to look at,” Offit said.
To Offit, the answer is for doctors to look to guidance from their corresponding medical association. For example, pediatricians should abide by American Academy of Pediatrics guidelines.
The confusion has also led doctors to be unsure about what insurance companies will cover, he said.
The Pennsylvania Health Department said residents will continue to get insurance coverage for shots recommended by the CDC as of last year. It’s not clear when insurers might change vaccine coverage, if they desired.
In such an uncertain landscape, patients are best served consulting medical professionals, according to Ramaeker.
“I really think that for patients this can be a confusing time, and I think they need to rely on their medical providers to make informed decisions for them, in conjunction with them,” Ramaeker said.