Turning to needed public health work-arounds

What happens when the nation’s public health is governed by people who don’t believe in science?

Others must step in to fill the gap, correct the record and attempt to override poor decision-making and bad advice. That time is now.

The latest example of Health and Human Services Secretary Robert F. Kennedy Jr. betraying his agency’s mission is the guidance that acetaminophen, known by the brand name Tylenol, is to blame for an increase in autism diagnoses. It’s a claim without merit and scientific research to back it. Experts, including the American College of Obstetricians and Gynecologists, say that Tylenol is safe to take during pregnancy in consultation with a doctor.

During a White House news conference with Kennedy last week, President Donald Trump implored pregnant women to “tough it out” and to “fight like hell not to take it.” If left untreated, fever in pregnant women can threaten the life of the mom-to-be, and cause birth defects in newborns. And pregnant women shouldn’t “tough it out” when it comes to extreme pain, either. Similarly, the president’s advice not to give Tylenol to newborns or young babies can be extraordinarily harmful.

Trump went further, providing false information about vaccines, including the one that prevents measles, mumps and rubella, saying “They pump so much stuff into those beautiful little babies.”

ASSOCIATION AND CAUSATION

Language here is important. There have been some studies that have shown an association between taking Tylenol and an autism diagnosis. That’s far from causation. Even if a large percentage of moms of children with autism took Tylenol, that doesn’t mean Tylenol causes autism. A host of other factors could be at work. What’s more, even the scientists behind some of the research that the White House has cited as evidence have said any risk is relatively small — and exists more for “regular users” of Tylenol — not those who take medicine just to treat a fever.

From all of this, we can really draw only one conclusion: More research is needed. Such work should not go back down already refuted pathways, such as the long-debunked notion that vaccines cause autism.

Instead, it’s critical to build on what we know, and use this new research to establish fact-based recommendations. Yes, the number of cases of autism and other related conditions have increased. Much of that is due to changes in evaluation and diagnosis, the widening spotlight on the issue and important early intervention efforts and therapies in young children. We know, too, that there may be genetic factors at work.

But establishing any link between Tylenol and autism remains unproven and, therefore, irresponsible at best. The Trump administration’s efforts interestingly also inserted the federal government into an ongoing legal battle between families and the manufacturer of Tylenol. Parents of children with autism are seeking damages against Tylenol but so far their claims have been dismissed. Two days after Trump’s news conference, the plaintiffs, represented by firms long associated with Kennedy, asked the U.S. Court of Appeals for the Second Circuit to consider Trump’s medical advice as grounds for reviving their lawsuit. The case will be heard next month. This is one link that people actually should be talking about.

PHYSICIANS’ COUNTERCLAIMS

Critically, a multitude of physicians’ associations and other groups, including obstetricians, family physicians and autism scientists, have pushed back on Trump’s claims about Tylenol. That’s helpful; the more we can rely on our own doctors and the groups that support them for accurate information, the better. Also key: There are important efforts by private and public entities to analyze data and report results separately from HHS and the Centers for Disease Control and Prevention. The newly established Vaccine Integrity Project, for instance, is a group of researchers, physicians and others who are assessing data, reporting their own findings and attempting to inform and guide the public on the importance of vaccination and other important health issues.

Some states, too, are attempting to work around and beyond the federal falsehoods. New York is one of nine states within the Northeast Public Health Collaborative; four Western states have similarly formed the West Coast Health Alliance. Both groups could provide a new public health structure and sound recommendations — like issuing recommendations on who should get the COVID-19 vaccine even though the influential federal Advisory Committee on Immunization Practices suggested recently it should be an individual choice.

As they move forward, however, state officials and doctors’ groups must be cautious and not add to confusion. But if trusted physicians and state collaborations can speak with one voice, and clearly delineate where they differ from federal officials and why, their work can be not only helpful, but necessary. It may be the only way to keep the nation’s public health — and its trust in science and medicine — intact.