Exclusive: How canceling a trial felt like 'jerking families around'

Plus: Should never-smokers be screened for lung cancer?

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By Theresa Gaffney Morning Rounds Writer and Podcast Producer

Good morning! I know I've only gotten medium-better at noting when I'm writing about STAT+ stories that live behind the paywall. I promise to work on flagging that more consistently. But you also might be interested in this: Until August 10, you can get three months of unlimited access to STAT for just $20.

exclusive In 'bad behavior,' Roche canceled a rare disease trial. What happened to the families? RUBY WALLAU FOR STAT Logan Sadecki received his first dose of a potential treatment for dup15q syndrome on Nov. 1. At 10 years old, he's nonverbal and has autism. His mother, Shannon, remembers how he was poked and prodded and often had to be held down to get his blood drawn during the clinical trial, run by the pharmaceutical company Roche. It would have been worth it, she said, to learn if the new drug could help her son. When she found out the trial was canceled, she felt like she'd been "hit by a bus." Pharmaceutical companies are businesses, and it's normal for them to shift priorities in the name of profit. Drugs in development for rare diseases are particularly vulnerable to these cuts, STAT contributor Elizabeth Cohen writes. So it was perfectly legal for Roche to end the trial that Logan and a handful of other children were participating in, but it was unusual "bad behavior," as one bioethicist put it. Read the STAT+ exclusive story on what happened and how parents and researchers dealt with the fallout. hospitals Doctors have diagnostic codes for housing insecurity. Do they work? There are specific codes related to housing status in the diagnostic system that hospitals use, the ICD-10. The codes identify when someone is dealing with homelessness, inadequate housing, or housing instability. While the presence of a code in somebody's medical records is a clear indication that they've struggled with housing, hospitals may be failing to assign such codes to many people who are struggling, according to a study published yesterday in JAMA Network Open. Researchers used self-reported housing questionnaire data from more than 14,500 people in Chicago who received care at a Health Care for the Homeless Program, comparing the responses with diagnostic code data on those same people from six local health systems. About 71% of all respondents dealt with housing instability but showed no code in their hospital records. Just 78 people, or 0.5%, were incorrectly categorized the opposite way, with a diagnostic code but no self-reported problems with housing. While the findings indicate a need to increase screening and documentation around housing in hospitals, there is one caveat, the authors write. They didn't have specific criteria for how much time could exist between when the person took the questionnaire and when they were in the hospital. That being said, most people had had a hospital encounter within six months. big names How Jeff Shuren stabilized FDA's medical device center People retire. Including at the FDA, where there's been a fast-revolving door between government and industry. But the agency's medical device director, Jeff Shuren, worked in government for 28 years. So when he announced his own retirement last month, the device world was stunned.  "It's sort of hard to imagine the FDA without him," one researcher told STAT's Lizzy Lawrence. Lizzy interviewed a dozen of Shuren's former colleagues, patient advocates, and industry representatives. While Shuren earned the industry's trust in his 15 years at the agency's device center, he was less successful with the public. Read more in STAT+ on Shuren's legacy and what awaits his future replacement.

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first opinion The kitchen chaos of 'The Bear' is giving hospital vibes FX PRODUCTIONS Everyone you know who has ever worked in a restaurant has told you how accurately it portrays the chaos of a restaurant kitchen. But psychiatrist Abraham Nussbaum says it reminds him of a different atmosphere: the hospital.  Mikey is like a tragic Gen X doctor who never finished residency. Uncle Jimmy represents the Boomer doctors who got in early, made a ton of money, but won't retire. Sydney (Boston's own Ayo Edebiri!) is the Gen Z doctor with all the skills, but none of the credentials. Carmy, the show's main character, embodies all the burnout and moral injury that so many doctors today are suffering from. In a First Opinion essay, Nussbaum writes about what clinicians can learn from the show's representation of an extremely hierarchical profession that involves high effort and ephemeral labor. Read more. cancer Experts say there isn't enough evidence to screen never-smokers for lung cancer Lung cancer is the most frequent killer of all the cancers, largely affecting people who smoke cigarettes. There's also a growing proportion of never-smokers getting the disease, leading experts to reconsider screening guidelines. But in a perspective published yesterday by the Journal of Thoracic Oncology, four doctors argue that there isn't enough evidence to support screening never-smokers, whether they have a family history or not.  A program in Taiwan revealed that screening never-smokers with a family history of lung cancer resulted in a detection rate more than twice the rate for high-risk decades-long smokers who were screened. But most of the cancers detected among never-smokers were in an early stage, and the harms of overdiagnosis or false positives cannot go ignored, the opinion authors write. They advocate for more research on the pros and cons of screening never-smokers, as randomized controlled trials have never been performed among this group. cardiovascular health Heart patients get better follow-up care overall, but disparities increase More Medicare patients recovering from heart failure or a heart attack are getting prompt care after getting discharged from the hospital. It's good news, but there's a downside: Racial disparities in access to this timely care are actually widening. The trends are identified in a study, published yesterday in the Annals of Internal Medicine, based on 10 years of Medicare claims data, STAT's Liz Cooney reports. Researchers analyzed whether patients visited a cardiologist or primary care clinician within a month of discharge.  "If we're improving overall rates, but the disparities are widening, are we really doing a good job of improving care for all?" one researcher who was not involved in the study said to Liz. Read more on why this follow-up care is so important, and what might be driving the disparities.

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What we're reading 'I feel dismissed': People experiencing colorism say health system fails them, KFF Health News and CNN Fifth of medicines in Africa may be sub-par or fake, research finds, The Guardian Congress is unprepared for the post-Chevron world. It needs help from subject matter experts, STAT In four years, one assisted living facility contacted police 151 times, Milwaukee Journal Sentinel Millions of people became uninsured as Medicaid programs cut coverage, new data show, STAT

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Thanks for reading! More tomorrow,

theresa.gaffney@statnews.com

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