ALS patients losing time and hope as they wait for insurers to cover a pricey new drug image

STAT, May 21, 2018
Ed Silverman, quoting I. Glenn Cohen (Faculty Director)

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From the article:

For the past two years, Sarah Benoit has been getting around with the help of a walker, waiting for a medicine that’s out of reach.

Benoit, a former congressional aide, has ALS, a fatal neurological disease that gradually causes muscle weakness and paralysis. As it progresses, she struggles to maintain a normal life, but holds out hope that a drug called Radicava — the first new treatment in 22 years — will slow her deterioration.

“The problem is the way the system creates incentives for both drug makers and insurers to act as they do,” said I. Glenn Cohen, a Harvard Law School professor who is an expert in bioethics and health law policy. “When you allow private insurers to make decisions with only a patchwork of state regulations, they will choose not to cover every drug approved by the FDA. And drug companies are for-profit entities that set prices based on market conditions. This is why you have debates over coverage.”

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