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Scientific sleuths, adults with cerebral palsy, and RFK, Jr.

November 4, 2024
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General Assignment Reporter

Need a distraction from your election anxiety? May I suggest the new album from Québécois fiddle whizzes Alexis Chartrand and Nicolas Babineau, which dropped on Friday and has us trad heads abuzz?

election

What would women's health look like under RFK, Jr.?

In these last, anxious days of the presidential campaign, politicians have been zeroing on women's health as one of the biggest issues in this election — and last Thursday, former president Donald Trump promised that Robert F. Kennedy Jr. would work on the topic as part of his next administration. 

Kennedy's history of vaccine skepticism has many in science, public health, and the biopharma industry — and even some Republicans — worried about what he would do if handed the keys to, say, a regulatory agency. As former Trump White House official Joe Grogan told STAT, "the RFK announcement has kind of scrambled some of the traditional thinking." RFK Jr.'s own cousin, prominent health care lawyer Ted Kennedy Jr., just endorsed Kamala Harris, telling my colleague Sarah Owermohle that "anti-vaccine rhetoric … is dangerous for the public health and safety of Americans."

On women's health specifically, Kennedy has been hard to pin down. At one point, he expressed support for federal abortion restrictions, but has since walked that back. Meanwhile, over the weekend Kennedy also said that Trump would seek to remove flouride from drinking water if elected.


over the counter

What really happens to drug prices when patents expire

In theory, a drug's price should go down once it's no longer protected by a patent. So what the heck happened with the blockbuster Humira, in that case? Its patent expired in 2016, but its average list price jumped from $752.41 in 2003 to $2,984.09 in 2021.

As Anna Yeo explains in this video, the answer lies in a tricksy legal maneuver from Abbvie, Humira's manufacturer. By adding on to the patent with new data about the drug, the company was able to create more obstacles for competitors that hoped to nab some of the market by selling biosimilars. Confused about how that works, or the difference between a generic and a biosimilar? Anna's video makes it all crystal clear.


first opinion

The case against eponyms 

In the 1960s, researchers discovered that what had once been considered a single rare disease known as Niemann-Pick was in fact two different illnesses, each with its own biology and prognosis. It wasn't until 2017 that scientists, patients, and caregivers recommended a new name for one of them — acid sphingomyelinase deficiency, or ASMD — to highlight how much more was now understood and to avoid confusion. 

But as Kara Ayik writes in a First Opinion, doctors and researchers have been slow to switch over. That poses a risk of mix-up, but also erodes patients' trust in their care team. Read more.



sleuths

The watchdogs scouring scientific papers for problems

who-to-know-scientific-sleuths-2Photo illustration: Christine Kao/STAT; Photos: Francesca Jones, Brian L. Frank, Kevin Patrick

We'd like to think that findings in peer-reviewed journals are trustworthy — good-faith contributions to the ever-evolving scientific literature. 

No such luck, alas. Where there's pressure to publish splashy results, there's an incentive to fake them, whether by nudging data in the direction you want or manipulating images. A loose affiliation of sleuths have devoted themselves to sniffing out these cases of misconduct. 

Their discoveries have already led to the departure of a Stanford president, sparked charges from the Department of Justice, exposed paper mills that sell authorship credits to CV-padding professors, and brought about eye-popping numbers of retractions. You can read more about these DIY data detectives from STAT's Jonathan Wosen.


disability

How adults with cerebral palsy get overlooked

Cerebral palsy is often referred to as "the most common motor disability in childhood." But, as Mark Peterson, a University of Michigan professor of physical medicine and rehabilitation, points out in a new perspective for the New England Journal of Medicine, there are more adults than kids living with this group of diseases in the United States. They often face serious issues when they graduate from pediatrics into adult medical practice.

"My doctor told me that I couldn't have cerebral palsy because I am no longer a child," one patient reported. "A medical support structure carefully built over decades, gone in a minute," said another. There are also gaps in the data used to assess outcomes later on in life, Peterson writes. He proposes reframing CP as "the most common lifelong physical disability" to help bolster understanding and ultimately allow people to get better care.


infectious disease

What to know about new Marburg cases in Rwanda

The Marburg outbreak in Rwanda has reached a critical stage. The country, aggressively battling its first viral hemorrhagic fever outbreak, appears to have gained the upper hand on the virus, which causes disease similar to Ebola. But these kinds of outbreaks are often hard to extinguish; late setbacks are all too common. After nine days without new cases, the last two weeks saw four new infections, at least one of which was a person who lived near one of the earliest known cases.

In a press conference on Friday, the WHO's incident manager for the outbreak, Rob Holden, described the new cases as "quite complex," adding that following up on them to establish how they fit into the outbreak picture has been challenging. Holden said increased surveillance is critical at this phase, a message the country appears to have taken onboard. Health workers are going door to door in the area where the outbreak is believed to have started, Minister of State Yvan Butera said late last week. To date there have been 66 confirmed cases and 15 deaths. — Helen Branswell 


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What we're reading

  • New research on migraines raises prospect of better therapies, Washington Post

  • Lawsuit to fix pulse oximeter bias makes progress with device manufacturers, STAT
  • 'Some were not happy': At Boston Children's Hospital, a dispute over how to screen children for gender transition, Boston Globe
  • Health care execs mostly donate to Democrats, but avoid Trump and Harris, STAT

Thanks for reading! More tomorrow — Eric


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