US ‘drowning in misinformation’ under RFK Jr, autism advocates say | US news

Misinformation from the Trump administration’s top health officials has created a “crisis of public trust” – and Congress should conduct oversight hearings and potentially impeach officials such as Robert F Kennedy Jr, the secretary of the US Department of Health and Human Services (HHS), according to a newly released report.

Experts say officials have focused over the past year on vaccines and autism, including working to link autism to the use of acetaminophen (often sold as Tylenol) during pregnancy, despite growing evidence of no link, and replacing all members of the federal autism committee with advisers with anti-vaccine and pseudoscientific backgrounds.

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 released by the Autistic Self Advocacy Network (ASAN) and the American Association of People with Disabilities (AAPD).

The report includes a timeline of all actions taken by HHS during the first year of the second Trump administration. Such changes have been “detrimental to its mission” and “detrimental to the autistic community,” such as mass layoffs, downsizing and layoffs, cutting autism research by approximately $31 million, and removing warnings about unsafe and unproven autism treatments from the U.S. Food and Drug Administration (FDA) website, said Zoe Gross, advocacy director at ASAN.

“When you look at it, one thing after another, you can really realize how upsetting it has been for those of us in the trenches of autism to try to combat this misinformation, this stigmatizing language and these poor decisions, and how determined this government is to spread misinformation and pursue policies that harm public health,” Gross said.

Such accounting is “crucial,” said Shannon Rosa, editor and co-founder of Thinking Person’s Guide to Autism, a neurodiversity resource center. The constant stream of actions is “like drowning in misinformation” because the administration has waged “a constant onslaught of misinformation, and having all of that exposed, especially when it comes to timing, is really helpful for people who feel like they can’t catch their breath and catch up,” she said. “While the flood of misinformation disempowers us, this type of accounting empowers us because it gives us a tool we didn’t have before.”

It’s especially important to track all of these movements shortly after they happen, instead of retrospective analyzes years later, Rosa said. “These are the talking points we can present to our community members. These are the talking points we can present to our county or state or city administrators and push back on them and say, ‘We don’t want this to happen.’

Another statement from Kennedy is now shaking the disability community, Rosa said.

Kennedy said during recent budget hearings that home health aides could defraud the government, because some caregivers were “paid to do things for free that they used to do as family members,” Kennedy said. That claim has sparked “consistent outrage” among people with disabilities and their loved ones, because paid family caregivers often cannot hold other jobs or support their family members without that help, Rosa said.

Last April, according to the report’s timeline, the administration took several high-profile actions, including issuing reduction notices and closing the office handling Freedom of Information requests, which diminished the capacity and transparency of health agencies. Kennedy told a cabinet meeting that they would “know the causes of autism” by September, and he held a press conference saying autism was “destroying families.” Jay Bhattacharya, acting director of the US Centers for Disease Control and Prevention (CDC), announced the creation of a national autism registry.

During April, Autism Acceptance Month (also known as Autism Awareness Month), officials appear to be downplaying unpopular initiatives as the midterm elections approach.

“RFK Jr was a lot less scandalous in April than last April,” Gross said. “We’ve seen, in recent months, HHS be a little more quiet about some of the things they’re doing,” like canceling the first IACC meeting indefinitely and then rescheduling it for Tuesday without much fanfare, she said.

But Gross added: “I think RFK Jr and his appointees are no less committed to anti-vaccine policies. »

Officials touted leucovorin, a B vitamin, as a treatment for autism, and said the use of Tylenol during pregnancy led to autism in an announcement in September. Yet the FDA recently approved leucovorin only for rare folate deficiency, not autism, and a growing body of research indicates no link between autism and acetaminophen.

“They could have chosen to double down on products like leucovorin and acetaminophen, but both of those efforts were met with enormous backlash,” Gross noted. “They may be aware of the backlash they received over these announcements, and now knowing that there is more evidence against both positions, they are choosing to hold back in light of the approaching midterm elections.”

But they haven’t corrected their September statements, Gross said: “They’ve let the misinformation they’ve already spread stand and continue to do harm.”

Orders for Tylenol for pregnant women in emergency rooms plummeted after the September announcement, and uncertainty was high.

“Although we’re in a moment where everything is pretty much being kept under wraps, these are still the beliefs of our highest officials at HHS and the government, and none of that has been reversed, and we have no indication that anyone has changed their minds,” Gross said.

The FDA still plans to update acetaminophen’s safety label to warn about “prenatal exposures and child development,” an HHS spokesperson said.

“We would really like to see Congress hold RFK Jr and HHS accountable for everything they have done over the past year that has been so harmful to the autism community and public health in general, with oversight hearings,” Gross said. “If it turns out, for example, during these hearings that RFK Jr. failed in his duty as secretary, then Congress should impeach him.”