The U.S. government will soon spend $25 million to help patients access experimental drugs for the incurable illness known as Lou Gehrig’s disease.
Under a recent law, the National Institutes of Health will begin spending about $25 million to enroll patients in compassionate use — also called open access — programs of unapproved drugs. The first step, announced Friday, will give patients access to a sugar-based injection called trehalose, that is thought to help nerve cells clear toxic proteins.
Fernandez Lynch and many other experts support the new approach as an innovative solution to the challenges facing ALS patients, who typically survive three to five years after initial symptoms. The disease destroys nerve cells needed to walk, talk and — eventually — breathe. ALS patients say most companies in their field are tiny startups that can’t afford such costs. Drugmakers have other reasons to deny access, including concerns that unexpected safety problems could hurt their approval chances.
The initiative is part of broader legislation pushed through Congress last year by patient advocates, including I AM ALS, a nonprofit co-founded by two former Obama White House staffers. The far-reaching bill requires the Food and Drug Administration to develop a plan to accelerate drug development and form new partnerships to study neurodegenerative diseases.
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