Why a $158,000 Drug With Unclear Benefits Hurts Whole Health System

Like many patients suffering from amyotrophic lateral sclerosis, or ALS—also known as Lou Gehrig’s disease—Layne Oliff didn’t have any time to waste.

Even before the drug Relyvrio was approved late last month by the Food and Drug Administration, he has had his own do-it-yourself method: He gets sodium phenylbutyrate in liquid form from a New Jersey pharmacy and taurursodiol online from Amazon. That costs him over $7,000 a year, but he says it has been well worth it because he feels the combination has helped stabilize a disease that often causes death within a few years.