Misinformation from top health officials in the Trump administration has created a “crisis of public trust” – and Congress should conduct oversight hearings and possibly impeach officials such as Robert F Kennedy Jr, the secretary of the US Department of Health and Human Services (HHS), according to a recently released report.
Experts say that officials in the past year have focused intently on both vaccines and autism, including efforts to connect autism to the use of acetaminophen (frequently sold as Tylenol) during pregnancy, despite growing evidence of no link, and replacing all members of the federal autism committee with advisers who have anti-vaccine and pseudoscientific histories.
The first meeting of the Interagency Autism Coordinating Committee (IACC) was abruptly postponed in March and rescheduled for Tuesday, the same day the report was published by the Autistic Self Advocacy Network (ASAN) and the American Association of People with Disabilities (AAPD).
The report includes a timeline of all HHS actions taken in the first year of the second Trump administration. Such changes have been “harmful to its mission” and “detrimental to the autistic community”, such as widespread layoffs, reductions in force and terminations, cutting autism research by about $31m, and removing warnings about dangerous and unproven autism treatments from the website of the US Food and Drug Administration (FDA), said Zoe Gross, director of advocacy at ASAN.
“When you look at it, one thing after another, you can really realize how overwhelming it has been for those of us who are in the autism trenches trying to combat this misinformation and stigmatizing language and these bad decisions, as well as how dedicated this government is to spreading misinformation and to pursuing policies that damage public health,” Gross said.
Such an accounting is “crucial”, said Shannon Rosa, a senior editor and cofounder of Thinking Person’s Guide to Autism, a neurodiversity resource hub. The constant flood of actions is “like drowning in misinformation”, because the administration has led “a constant assault of misinformation, and having it all laid out, especially with the timeline, is really helpful for people who just feel like they can’t catch their breath and catch up,” she said. “Whereas the flood of disinformation is disempowering, this kind of accounting is empowering because it gives us a tool that we didn’t have before.”
It is particularly important to track all of these moves soon after they happen, instead of retrospective analyses years later, Rosa said. “These are the talking points that we can take to our community members. These are the talking points that we can take to our county, state, city administrators and push back and say, ‘We don’t want this to happen.’”
Another Kennedy pronouncement is now rocking the disability community, Rosa said.
Kennedy said in recent budget hearings that home health aides might be defrauding the government, because some caregivers were “getting paid to do things that they used to do as family members for free”, Kennedy said. The assertion prompted “constant outrage” among disabled people and their loved ones, because paid family caregivers frequently can’t work other jobs or support their family members without this assistance, Rosa said.
Last April, according to the report’s timeline, the administration made several high-profile moves, including issuing reduction-in-force notices and closing the office managing freedom of information requests, which diminished the capacity and transparency of health agencies. Kennedy said in a cabinet meeting that they would “know the causes of autism” by September, and he held a press conference saying autism is “destroying families”. Jay Bhattacharya, acting director of the US Centers for Disease Control and Prevention (CDC), announced the creation of a national autism registry.
This April, which is Autism Acceptance Month (also known as Autism Awareness Month), officials appear to be downplaying unpopular moves ahead of the midterm elections.
“RFK Jr has been much less outrageous this April than he was last April,” Gross said. “We have seen, in recent months, HHS be a little quieter about some of the things it’s doing,” such as cancelling the first meeting of the IACC indefinitely and then rescheduling it for Tuesday with little fanfare, she said.
But, Gross added, “I think RFK Jr and his appointees are no less dedicated to anti-vaccine policies.”
Officials touted leucovorin, a B vitamin, as an autism treatment, and said that Tylenol use during pregnancy led to autism in a September announcement. Yet the FDA recently approved leucovorin only for a rare folate deficiency, not autism, and a growing body of research points to no link between autism and acetaminophen.
“They could have chosen to double down on things like leucovorin and acetaminophen, but there was huge backlash to both of those pushes,” Gross noted. “It may be that they’re conscious of the backlash that they received when making those announcements, and knowing now that there’s more evidence against both of those positions, they’re choosing to hold back in light of the midterms coming up.”
But they haven’t corrected their September statements, Gross said: “They let the misinformation that they have already disseminated stand and continue to do harm.”
Orders of Tylenol for pregnant people in emergency rooms dropped after the September announcement, and uncertainty abounded.
“While we’re in a moment where it’s being kind of kept quiet, these are still the beliefs of our highest officials in HHS and in government, and none of that has been walked back, and we have no indication that anyone has changed their mind,” Gross said.
The FDA still plans to update the safety label for acetaminophen to warn about “prenatal exposures and child development”, an HHS spokesperson said.
“We’d really like to see Congress hold RFK Jr and HHS broadly to account for everything they’ve done over this past year that has been so harmful to the autistic community and to public health generally, with oversight hearings,” Gross said. “If, for example, RFK Jr is found in those hearings to have been derelict in his duty as secretary, then Congress should impeach him.”
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