for STAT News: What happens when a rare disease drug seems to work, but the health care system doesn’t? by José A. Alvarado Jr.

News

for STAT News: What happens when a rare disease drug seems to work, but the health care system doesn’t?

josé a. alvarado jr.

Apr 2, 2025

Cristina Brennan can hear the clock ticking.

At the end of the year, her 12-year-old son Tristan will no longer have free access to a pricey medicine that has successfully helped him combat a rare form of epilepsy. This means that after being on the treatment — made available to him through a clinical trial since early 2022 — he may once again have to cope with seizures that will worsen his health, diminish his quality of life, and place a proverbial cloud over his future.

Photographed for STAT News, with words by Ed Silverman

What happens when a rare disease drug seems to work, but the health care system doesn't?
Cristina Brennan can hear the clock ticking. At the end of the year, her 12-year-old son Tristan will no longer have free access to a pricey medicine that
Statnews.com

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José A. Alvarado Jr.

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