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NIH to fund unproven ALS drugs under patient-backed law

This photo provided by ALS patient Brian Wallach shows him and his wife, Sandra Abrevaya, at their home in Chicago on May 2021. Wallach, who formed I AM ALS with Abrevaya after being diagnosed with ALS in 2017, spent years working on legislation with congressional staffers, researchers and patients which passed the House last December in a landslide 423-3 vote. (Julie Dietz via AP)
This photo provided by ALS patient Brian Wallach shows him and his wife, Sandra Abrevaya, at their home in Chicago on May 2021. Wallach, who formed I AM ALS with Abrevaya after being diagnosed with ALS in 2017, spent years working on legislation with congressional staffers, researchers and patients which passed the House last December in a landslide 423-3 vote. (Julie Dietz via AP) This photo provided by ALS patient Brian Wallach shows him and his wife, Sandra Abrevaya, at their home in Chicago on May 2021. Wallach, who formed I AM ALS with Abrevaya after being diagnosed with ALS in 2017, spent years working on legislation with congressional staffers, researchers and patients which passed the House last December in a landslide 423-3 vote. (Julie Dietz via AP)

By Matthew Perrone 6 min read

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.

Only patients who can’t get into conventional drug trials are eligible for the program. And their progress must be tracked to gather data about the treatment and their underlying disease, amyotrophic lateral sclerosis, or ALS.