Joining the ranks of rare-disease drugs with astronomical price tags, Keveyis - a drug therapy for treating periodic paralysis - has seen its cost rise, fall, and rise again to the current price of $15,001 for 100 pills.
According to the Los Angeles Times, the price changes reflect changes in ownership and usage over the past couple of decades, taking Keveyis (formerly known as the glaucoma drug Daranide) from free in 2016 to a lucrative investment for its present owner.
Daranide was approved half a century ago, often used to treat glaucoma. Some people with the rare neuromuscular condition, periodic paralysis, began taking it off-label to help control their disease. With a list price of $50 for 100 pills in 2001, it wasn't a drug people remember as hard to obtain.
Merck discontinued the drug in the early 2000s, leaving patients either without the medication or finding ways to import it from other countries.
In 2008, Daranide was purchased by the family that owned Taro Pharmaceutical Industries and was also personally affected by periodic paralysis, with the goal of returning the drug to U.S. markets.
But after Taro was bought out by Sun Pharmaceutical, Daranide finally received approval as a treatment for periodic paralysis - and along with it, a new name, new price, and seven years of exclusive marketing rights.
The price jumped to $13,650 for 100 pills of the old-but-new drug, which Sun Pharmaceutical eventually dropped to zero dollars in 2016 following a Washington Post expose outing its sky high cost.
This was good news for patients, but it was not to last:
Late last year, Sun agreed to sell Keveyis to a biotech company, Strongbridge Biopharma, for $8.5 million. In April, Strongbridge relaunched the drug — and in August, it raised the list price to $15,001 for a bottle of 100 pills.
Strongbridge estimated the annual cost to patients for treatment would be $109,500 to $219,000, depending on dosage. That cost might be good for recouping investment, but it presents a troubling situation for patients:
"It's either: People get ripped off, but they live, or they don't get ripped off, and they die. It's a little bit of a blackmail situation," said Jacob Levitt, who has watched the price increases with dismay. "The business model is a little bit taking advantage of making a cheap drug very expensive."
"What they have done is found the mechanism for making a lot of money off of a drug they didn't have to make a lot of money off of," Levitt said.