September 5, 2025
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Disability in Health Care Reporting Fellow
Another meaty Friday newsletter, including full coverage of a rowdy and raucous hearing with Robert F. Kennedy Jr. Let’s get to it.

POLITICS

RFK Jr.’s hearing roundup

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Thursday’s Senate Finance Committee hearing with health secretary Robert F. Kennedy Jr., got heated (sadly, not like Beyoncé). Our live blog captured the news, the shouting, and every zinger (definitely worth a read if you want a thorough recap). Here’s a roundup of the action and what it means:

  • Is Senate Republican support of Kennedy fracturing? Chelsea Cirruzzo had a literal front-row seat to watch senators like Bill Cassidy (La.) question Kennedy over his contradictory statements on mRNA vaccines and Operation Warp Speed, the initiative by President Trump that got Covid-19 shots to millions of Americans.
  • Kennedy said former CDC Director Monarez lied about her firing. The secretary disputed Monarez’s account of events, saying he did not tell her to greenlight whatever policies his handpicked panel of vaccine advisers recommended before he fired her. He also called the CDC the most corrupt agency in the government.
  • Mostly mum on autism, vaccines. Several senators questioned Kennedy about his announcement that HHS will release new findings this month about factors leading to a rise in autism. The secretary also said HHS would be conducting observational studies to analyze whether approved childhood vaccines are linked to chronic diseases.
  • Can anyone get a Covid shot if they want one? No. Though Kennedy insisted in the hearing that he wasn’t limiting access to Covid vaccines, changes to the Food and Drug Administration-approved labeling for the shots are colliding with state law and impeding access for millions. Important fact check from Matt Herper.

GRANTS

NIH whistleblowers allege malfeasance on grant cancellations, vaccine science

New complaints by two former top National Institutes of Health officials allege that the Trump administration has illegally targeted vaccine science, terminated grants, and circumvented scientific peer review for a $500-million-dollar program created to study flu vaccines. 

The whistleblowers claim they were illegally forced out of their jobs in retaliation for raising concerns about these changes and about the increasing influence of political appointees. The complaint highlights the influence of deputy director Matthew Memoli, alleging that he went against priorities the NIH set forth in its 2021-2025 strategic plan. The National Institute of Allergy and Infectious Diseases has also been heavily targeted.

“People need to know the story of what went down,” said Jeanne Marrazzo, one of the whistleblowers and a former director of the National Institute of Allergy and Infectious Diseases. “The focus on vaccines and infectious diseases really demands a full accounting of how what’s happened at NIH dovetails very well with what’s happening and being done” at the Centers for Disease Control and Prevention and other health agencies. 

Read more from STAT’s Anil Oza and Megan Molteni.
 


ADVOCACY

Indefatigable muscular dystrophy advocate Donovan Decker passes away

You should read Jason Mast’s obituary of Donovan Decker. The Kansas man’s advocacy for the muscular dystrophy community paved the way for gene therapy’s resurgence over the past decade, including approval of the first gene therapy treatment for spinal muscular atrophy and Duchenne, the best-known and most-severe form of muscular dystrophy.

Decker died Monday at age 62. There are still no treatments for his condition, known as limb girdle muscular dystrophy, but his willingness to participate in experimental trials proved pivotal. Geneticists told Decker that he would never personally benefit from the treatments. He didn’t care. The longtime air traffic control specialist insisted on helping however he could.

Decker’s death comes on the heels of a contentious year for the muscular dystrophy community. Sarepta Therapeutics, facing financial challenges and the death of a patient in another LGMD trial, have pulled away from the developing treatments for the disease. Read the obituary here.



MAHA

HHS won’t release major alcohol study

Adobe

A key government study about alcohol and its health harms won’t be released publicly, STAT’s Isabella Cueto reports.

A draft of the report found even moderate drinking (one or two drinks per day, depending on a person’s gender) could increase the risk of injuries, liver disease, and cancer. The final report stuck to those findings, its authors say. Shelving the document will be “to the detriment of the people’s health,” according to a person who worked on the project. 

The killed report suggests that alcohol use isn’t high on the MAHA priority list, despite robust evidence that heavy drinking is a major driver of disease and death in the U.S. An HHS spokesperson declined to answer questions about whether the final report would be released or used to develop the new round of dietary guidelines. Read more here. 


tRANS

Another study showing trans identity persists

A new study confirmed what the trans community has long known: when people transition, they rarely detransition.

A JAMA study found that among 2,467 adults who legally changed their gender in Sweden, only 21 people sought to reverse the change. That’s less than 1%, according to my computer’s calculator. The study gathered this data from 7,293 people who received a gender dysphoria diagnosis between 2013 and 2023.

Some people have suggested that as gender dysphoria diagnoses increase, detransition rates would increase, too. This study throws cold water on this hypothesis, suggesting that detransitions are glancingly rare. Read the study here.


MISC

Another roundup, as a treat

Simply too much health news today! Here are a few more items you should know about:

  • The FDA’s shift from advisory committees to “expert” panels won’t streamline anything. It’s merely a retreat from transparency, scientific rigor, and public accountability, writes a drug safety expert who has chaired or served on more than a dozen FDA advisory committees.
  • Bad news: there’s another Ebola outbreak in Congo. An early report suggests 28 suspected cases and 15 deaths in the country’s southern Kasai province. It’s the country’s 16th outbreak of the highly contagious disease.
  • The FDA pushed back their final ruling on the use of shock therapy for people with disabilities — again. The rule governing “electrical stimulation devices” was set to publish in October. It is now slated for May 2026.
  • Buyer beware — the FDA found traces of H5N1 in certain cat foods, like RAWR Raw Cat Food Chicken Eats Good. H5N1, or bird flu, can cause illness and death in cats, dogs and other pets. As we’ve said in the past: pets should be included in disease surveillance.

More around STAT