Boosting an ALS patient's independence with a box and a balloon

Alex Hogan/STAT

A new wearable device from Harvard engineers aims to improve quality of life for people with amyotrophic lateral sclerosis. Using an inflatable balloon for shoulder support, the prototype helps a person eat by themselves. For people with the neurodegenerative disease who have lost mobility, the contraption offers them a chance to regain some sense of autonomy.

Soft, wearable “robots” are an emerging technology for rehabilitative purposes, as flexible fabric and velcro can accommodate humans’ fleshy bodies better than rigid exoskeletons — especially for upper limb support. To see the device in action and how it can help someone eat, check out this story and video from STAT’s Timmy Broderick and Alex Hogan.

policy

More states move to ban weight loss supplements for minors

Legislators in nine states have made moves to ban the sale of unregulated diet pills and supplements to minors. On Wednesday last week, California’s health committee voted in favor of the most recent attempt, and legislators in Massachusetts have shown support for a similar bill in recent weeks. But only New York has actually passed a ban, which went into effect at the end of April.

Nearly 1 in 10 adolescents have used some type of poorly regulated, non-prescription weight loss products, as I reported earlier this year. These products are sold in pharmacies, grocery stores, and online. But the products often act like stimulants that can pose immediate cardiac risks, as well as longer-term risks for disordered eating, experts told me.

psychedelics

The inside story of how Lykos’ MDMA research went awry

Things got heated at an FDA advisory committee last week, as Lykos Therapeutics sought scientists’ backing for MDMA-assisted therapy to treat PTSD. Committee members voted overwhelmingly against the therapy, expressing frustration that the company failed to follow instructions and track positive feelings such as “euphoria” that could be used to inform their understanding of the drug’s addiction potential. The FDA will use the committee’s feedback to decide by Aug. 11 if the treatment will get approval.

Lykos executives said they’d simply misunderstood the FDA’s instructions, but three former employees told a different story to STAT’s Olivia Goldhill. The company was long aware it was required to collect such data, they said, and simply failed to do what was needed amid widespread disorganization. Read more from Olivia on what went wrong.

first opinion

Two parents call on Congress to help cure pediatric rare diseases

Adobe

Joe and Courtney Dion are the parents of two children living with an ultra-rare form of muscular dystrophy. When their first was diagnosed, they were heartbroken to hear there was no treatment. That news didn’t change by the time they got their family’s second diagnosis.

As many as 30 million Americans live with some type of rare disease — and two in three of those are children. These diseases typically lack any approved treatment, never mind a cure. But it isn’t science that’s standing in the way of solutions — it’s economics, the Dions write. A federal program that incentivizes pediatric rare disease research will expire in September. Without swift action by Congress to reauthorize the program, the difficult task of curing and treating rare childhood diseases will get even harder, the parents argue. Read more.

research

NIH launched a $30 million project to create its first primary care research network

The disconnect between where medical care happens — very often, primary care settings — and where research is — large, specialized academic centers — is a challenge for patients. It’s a problem for clinical trials, too, which fail to capture the country’s real diversity. To change this, NIH just launched a new pilot program to fund a selection of primary care sites and offer them the opportunity to participate in a broad range of clinical studies.

This is the first time the agency has brought research into the primary care setting, and it hopes to learn a lot about it. The sites’ study selection could illuminate the most pressing issues facing the communities they serve — eventually, allowing patients to access even more relevant research opportunities. Read more from STAT’s Nalis Merelli on the promise of the effort, and some potential pitfalls.

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