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MIT Technology Review·5 min read·medium

Montana’s new “right to try” law can’t come soon enough for some

J
Jessica Hamzelou
Montana’s new “right to try” law can’t come soon enough for some
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A father in Montana is seeking access to an experimental drug for his toddler, who suffers from a rare genetic condition. A new 'right to try' law in the state aims to provide patients with earlier access to treatments that have not yet completed clinical trials.

Why it matters

The story highlights the tension between patient advocacy for experimental treatments and the regulatory safety standards of the medical industry.

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Kris DeVault’s toddler has a rare genetic disease. He’s desperate to try an experimental drug, even though it has not been through clinical trials.

His son, Brody, was born in March 2023. It wasn’t long before he started to show signs of developmental delay, says DeVault. As time went on, Brody started missing key milestones in speech, movement, and coordination, he says.

When Brody was around two and a half years old, a genetic test revealed creatine transporter deficiency—a rare condition in which the brain and muscles lack the energy they need to develop.

There are no cures for Brody’s condition. But DeVault has learned of a company developing a drug that might help. That drug is still in the early stages of development and has only been tested in animals and a small number of healthy adults. Doctors can’t prescribe it.

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