October 9, 2019 / 11:25 PM / 13 days ago

Clinuvel says U.S. pricing of rare disorder drug will not top European levels

Oct 9 (Reuters) - Australian drugmaker Clinuvel Pharmaceuticals Ltd said on Wednesday the pricing of its recently approved treatment for a rare genetic disorder in the United States will not top its price in Europe.

The drug, Scenesse, was approved by the U.S. Food and Drug Administration on Tuesday to treat erythropoietic protoporphyria (EPP), a painful disorder that causes the skin to itch, burn, and scar in some rare cases, when exposed to sunlight and some types of artificial light.

Scenesse is available in Europe since 2014, where its price ranges between 70,000 euros ($76,811.00) and 100,000 euros ($109,730.00) per patient per year.

"We are not going to price the drug above levels that we price it in Europe," Chief Executive Officer Philippe Wolgen told Reuters. "This very much befits the political climate."

Drugmakers in the United States have come under increasing political scrutiny to lower costs to consumers and have responded by limiting annual list price hikes to under 10% in many cases.

The list price is not necessarily what patients actually pay for a drug. "Out-of-pocket" costs vary based on the duration of the treatment and individual healthcare plans. ($1 = 0.9113 euros) (Reporting by Manas Mishra in Bengaluru; Editing by Anil D'Silva)

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