It's a rare genetic illness and, in the Washington Post's telling, a "frightening" one. And it's one whose symptoms many sufferers were able to control for free, or a pittance. That's changed in an extreme and dramatic fashion in recent years, making the drug Keveyis yet another example of out-of-control drug prices. But this case has a twist: It's one of good intentions that took a turn. The drug was developed in the late '50s to treat glaucoma, and was sold under the name Daranide. But those suffering from periodic paralysis, which can cause spells of immobility, discovered it helped ease their symptoms. For the remainder of the 20th century, it came cheap; the Post puts its list price at $50 for 100 pills in 2001. But then Merck discontinued it, and those desperate to obtain it had to import it from abroad; the monthly cost increased to roughly $300.
But in 2008, Taro Pharmaceutical Industries acquired Daranide with good intentions: The former chair's son suffered from periodic paralysis, and while he didn't use Daranide, he was aware of the need for it. Two years later, Sun Pharmaceutical Industries purchased a controlling stake in Taro, and in 2015, the drug was officially approved to treat periodic paralysis and relabeled as Keveyis. The new price: $13,650 for 100 pills. The Post asked questions in 2016, and Sun decided to drop the price to zero—which was the price for a short time, until Strongbridge Biopharma late that year bought the drug and jacked the list price to $15,001 per 100 pills; it told investors that annual treatment would cost $109,500 to $219,000. Many insurers pick up the entire tab. The Hill reports Sen. Claire McCaskill is "demanding answers" on the price hike and on Tuesday reached out to the company.