NIH to fund unproven ALS drugs under patient-backed law
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
WASHINGTON (AP) — When patients with a deadly diagnosis and few treatment options have tried to get unapproved, experimental drugs, they have long faced a dilemma: Who will pay?
Responsibility for funding so-called compassionate use has always fallen to drugmakers, though many are unwilling or unable to make their drugs available for free to dying patients.
After years of lobbying Congress, patients with the debilitating illness known as Lou Gehrig’s disease have found an unprecedented solution: make the federal government pay.
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.
