amyotrophic lateral sclerosis

Patients with insurance coverage say the cost set by drugmaker Amylyx Pharmaceutical is fueling insurance delays or denials, and sometimes exorbitant out-of-pocket expenses.

In March, experts who advise the FDA questioned the efficacy of an experimental new drug for ALS. In September, they voted to approve it anyway.

The vote by the agency's health advisers is a potential setback for patient groups who have lobbied for the medication’s approval for more than a year.

Scientists say new drugs are on the way for patients with ALS. The latest is a two-drug combo that appears to slow the progression of the fatal nerve disease with a modest but meaningful benefit.

Structures inside healthy brain cells nimbly move from one state to the next to perform different functions. But in certain degenerative brain diseases, scientists now think, that process gets stuck.