HAWTHORNE, N.Y. — Taro Pharmaceutical USA on Tuesday announced a plan to make its primary periodic paralysis drug Keveyis (dichlorphenamide) available to distributors at no cost. The company will stop commercial sales and promotional activities for the ultra-rare disease treatment.
“We embarked on this decade-long journey to help a patient community in need and we are proud that it resulted in Keveyis, the first medicine approved for the treatment of periodic paralysis,” Taro USA CEO Kal Sundaram said. “Through heartfelt testimonials, patients have told us how their lives have changed for the better thanks to this treatment being available.”
Taro said that it had expected to only treat a few hundred patients with Keveyis, but that the company had difficulty reaching a small pool of people — of those estimated to have periodic paralysis, fewer than 1,500 are thought to be diagnosed, and among these lifestyle changes and off-label prescription medications are used to manage the illness.
As a result, Keveyis has seen less than $1 million in sales, and the investment in marketing the drug has become unsustainable, the company said. The company said that many patients have an average out-of-pocket cost of less than $25 per month, and some have received the treatment for free through Taro’s support program and patient assistance program.
“This decision extends our desire to ensure that anyone with a prescription will continue to have access to the medicine regardless of insurance status or ability to pay,” Sundaram said.