ALS Association battles local chapters, CF patients left behind may catch up, & a polio case in Europe

"For the first time, it feels like we're the focus," said Emily Kramer-Golinkoff, who advocates for CF patients who aren't yet helped.

February 3, 2023 Check out STAT+

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By Elizabeth Cooney Reporter, Morning Rounds Writer

Good morning. If you've ever wondered about the 10% of CF patients whose disease isn't helped by the life-changing treatments now available, read about what may be on the horizon for them.

Health ALS advocacy group and its local chapters are battling over control It was the 2014 Ice Bucket Challenge that catapulted the ALS Association into wider public consciousness, raising money and awareness for the progressive neurological disorder that leads to muscle weakness and paralysis. Now the organization and some of its local chapters are battling over a plan to take over those local offices. In their lawsuit, the local chapters say it's all about the money they raise, which has outpaced national numbers in recent years. The national office now takes in nearly 14% of all revenue raised by ALS chapters, investing it in research, clinic certification, and lobbying. "Ceding control of the chapters' fundraising and provision of care services would be disastrous for the patients and families the chapters serve," the chapters wrote in their lawsuit. "We are confident that our decision to unify was legal and sound," the ALS Association said in a statement. STAT's Andrew Joseph and Ed Silverman have more. politics Two views on the Senate health committee agenda: industry greed vs. killing innovation Here's an unlikely duo to helm the Senate's health committee: Vermont Independent and drug-pricing firebrand Bernie Sanders will team up with Louisiana Republican and doctor Bill Cassidy. In separate interviews, STAT's Sarah Owermohle asked them to weigh in on where they can and can't work together. They agree they have to put the national shortage of nurses high on the bipartisan to-do list, but they diverge on drug pricing. Sanders: "We're going to take a very hard look at the greed of the pharmaceutical industry." Cassidy: "I think that Senator Sanders goes to the point where he would kill innovation." They do see common ground. Sanders, who chairs the committee, said he thinks expanding community health centers and improving dental coverage could get both parties' buy-ins, while Cassidy, the ranking GOP member, pointed to mental health care legislation and probing the rollout of efforts to eliminate patients' surprise medical bills. Read more. infectious disease A rare polio case points to how hard containment is Polio isn't eradicated yet — that singular distinction still belongs to smallpox — but a recent infection in the Netherlands points to how challenging it will be to keep polio from coming back when labs around the world will need to continue their research on the viruses. The Dutch case, reported in Eurosurveillance, was detected only by the routine wastewater surveillance required by the country near facilities that work with polioviruses. The next steps involved a public health investigation, testing dozens of employees, and prolonged isolation of one of them, who shed virus for 51 days. "Containment is a much bigger issue than people realize," Kimberly Thompson, a polio expert who is president of the nonprofit organization Kid Risk, told STAT's Helen Branswell. It's not known how the employee became infected with type 3 polio, one of two eradicated strains. The authors found no evidence the individual infected anyone else. Read more.

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Closer Look The 10% of CF patients left behind by a life-changing treatment may finally gain one that works Molly Ferguson for STAT When you think of life-changing therapies, treatments for cystic fibrosis are high on the list. Developed by Vertex Pharmaceuticals and first approved in 2012, medicines for the genetic disease have transformed the lives of patients whose lungs were dangerously clogged by mucus and whose other organs, including the insulin-producing pancreas, were also compromised. But for approximately 10% of patients, those drugs don't work. Their genetic mutations vary too much to benefit. That's changing, with clinical trials underway at Vertex and several other biotech companies testing a way around these devastating differences that make current therapies ineffective. "For the first time, it feels like we're the focus," Emily Kramer-Golinkoff, who has CF and advocates for patients who aren't helped by the drugs, told STAT's Andrew Joseph. Read more on how biotech companies are meeting the challenge to design and deliver a treatment for all people with CF. tobacco More than half of Americans back a tobacco ban Just over half of Americans favor a ban on all tobacco products, a new CDC survey says, even though most of the attention on smoking restrictions has lately focused on flavored tobacco products. The 57% of respondents who support such a ban share that sentiment with other people around the world, including smokers, STAT's Nicholas Florko tells us. In Hong Kong, a 2015 survey found that nearly half of smokers got behind a total ban on tobacco. In the European Union, a 2018 survey reported 40% of smokers and recent quitters supported a total tobacco ban on within 10 years. And in New Zealand, a 2013 survey said 46% percent of smokers agreed with such a ban in 10 years. (Only about one-quarter of current smokers in the CDC survey said they would support banning all tobacco products.) "The public is ahead of policymakers and even public health on this issue," said Ruth Malone, a researcher at UCSF who studies the tobacco industry. "Public health leaders need to have a spine." Read more. health Flu shots hit their target this year Remember flu? This winter's cases appear to have peaked unusually early, but like so many other pandemic-era bugs, flu's seasonality and severity have become question marks. Here's some good news from Canada, spotted by STAT's Helen Branswell. This season's flu shot has cut in half the risk of infection severe enough to need medical care, vaccine effectiveness researchers estimate. That's especially good because shots targeting the H3N2 virus, which CDC said has caused most illnesses in the U.S., are typically the weakest link of flu immunizations, often coming in below 40% in vaccine effectiveness. This year's vaccine is well-matched to the circulating viruses, the researchers conclude in their report in Eurosurveillance. In the U.S., vaccine strains for the 2022-23 flu season's shots were chosen ahead of the season by FDA's Vaccines and Related Biologic Products Advisory Committee, based on WHO's recommendations for the Northern Hemisphere. by the numbers

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Thanks for reading! More Monday,

@cooney_liz

elizabeth.cooney@statnews.com

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