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Rare disease patients are getting caught in the crosshairs

August 6, 2025
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Morning Rounds Writer and Podcast Producer
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politics

Canceling NIH grants was unlawful, per watchdog

An independent government agency has found that the Trump administration, by abruptly canceling NIH grants, violated a law that blocks presidents from withholding congressionally approved funding. The Government Accountability Office said in a report issued yesterday that HHS "has not shown that the delay was a permissible programmatic one."

The findings are nonbinding but could empower Congress to push back against the Trump administration's efforts to use the NIH budget as leverage over institutions like Columbia and Harvard. Read more on the report and what it means from STAT's Anil Oza and Megan Molteni.


reminder

Raw milk is still dangerous

Twenty-one people are sick with E. coli or bacterial infections called campylobacter after consuming raw milk from a farm in Florida, per the AP. That includes six children. Seven people have been hospitalized, and at least two are suffering severe complications. 

As a reminder, unpasteurized "raw" milk has long been considered unsafe because it can transmit pathogens like these. Nevermind the fact that H5N1 bird flu swept through dairy cattle across the country last year. While some people believe that it's possible to regulate the product enough to make it safe, the black market for raw milk in states where it's restricted is currently operating unchecked by the FDA.  


one big number

$500 million

That's how much funding for vaccine development HHS is canceling, according to an announcement yesterday from health secretary Robert F. Kennedy Jr. The Biomedical Advanced Research and Development Authority, better known as BARDA, is terminating 22 grants supporting the development of mRNA vaccines, delivering a crippling blow to the country's capacity to develop vaccines during the next pandemic or public health emergency. Helen Branswell has more, including insight from a former director of BARDA.



health

Rare disease patients caught in Trump's crosshairs

A close up of Ellyn Kodroff, who look sstraight at the camera, with her face half lit by the sun.

Kayana Szymczak for STAT

Global partnerships are a critical part of research on rare diseases — with so few patients to study in any one country, scientists have to search far and wide to identify the causes and test potential treatments. But as the Trump administration began allowing NIH grant reviews to resume this spring after a months-long pause, it also quietly tightened its requirements for applications with a foreign component. Now, forgetting to include a single document regarding a project's foreign collaborators is grounds for a withdrawal without review (meaning the grant application gets denied).

"In the grand scheme of things, it's not that much money for the federal government," said Ellyn Kodroff, pictured above. "But it's so devastating for this community." Kodroff's daughter has a rare digestive disorder and recently was able to begin an experimental treatment at the NIH Clinical Center. But the group running the trial had its latest funding request withdrawn because of the forgotten document.  

It's not the only group that's been affected, STAT's Megan Molteni learned. And the move is just the first in a much more sweeping effort to limit funding for foreign scientists. Read more from Megan on what the effects will be. 


And another thing

Wildfire smoke is also still really bad for you

Hundreds of wildfires burning across the Canadian provinces of Manitoba and Saskatchewan are pushing smoke across Canada and the American northeast. Canadian towns close to the wildfires are experiencing the worst of the smoke pollution, but even here in Boston, there was a brief ground stop at the airport Monday due to smoke and haze. 

It's getting better, but here's a reminder: 

  • Wildfire smoke is particularly harmful to kids' respiratory health. One study found that a 10-unit increase of fine particulate matter from wildfire smoke was associated with a 30% spike in pediatric admissions for respiratory problems. "It's quite a big bit of a difference," the lead author said.
  • Researchers have found that people who live in areas with high levels of fine particulate matter could have a greater risk of developing dementia, with a particularly strong link seen between the condition and exposure to wildfire emissions. Still, there are a lot of questions remaining about other long-term effects.
  • In California, between 2008 and 2010, somewhere between 52,480 and 55,710 people died prematurely due to chronic exposure to wildfire smoke. The economic impact of those deaths was at least $432 billion.

feedback

For doctors, patient complaints beget … industry payments? 

The more unsolicited complaints from patients that doctors receive, the more likely they are to take higher payments from industry, according to a study published yesterday in JAMA Network Open

Researchers analyzed data from almost 72,000 doctors whose clinics participate in the Patient Advocacy Reporting System Index. Complaints logged there were cross-referenced with data on the same physicians in the Open Payments Program database. Those who had higher PARS scores — which are calculated with the number and the severity of patient complaints — were significantly more likely to accept general payments (meaning not for research), particularly for higher amounts.

Male physicians and those practicing in nonacademic settings were also more likely to accept larger general payments. The results demonstrate an urgent need for clinics to address conflict and trust between physicians and patients and to strengthen the management of financial conflicts of interest.

 


More around STAT
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What we're reading

  • 'Baby Olivia,' an anti-abortion tool, might be in classrooms this fall, Teen Vogue

  • Bird flu may be airborne on dairy farms, scientists report, New York Times
  • The GOP is choosing pesticides over the MAHA moms, Bloomberg
  • Trump is threatening health care giants with the weight of the federal government. It's working — sometimes, STAT

Thanks for reading! More next time,


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