Statement on Luxturna’s $850,000 Price Tag

WASHINGTON, DC — The following statement was issued by David Mitchell, a patient with incurable blood cancer and the president and founder of Patients For Affordable Drugs, regarding the announcement of an $850,000 price tag for Luxturna, a new treatment that can correct a defective gene responsible for blindness in a small number of Americans.

“Spark Therapeutics is charging as much for Luxturna as they think they can get away with. Our system cannot handle unjustified prices like this, and the new payment models announced today are merely a way to disguise a price that is simply too high.

“Luxturna offers hope to hundreds of patients. But the question that must be asked is this: what is a fair price that will maximize affordability and accessibility and provide a reasonable return for the drug? The answer to that is certainly not the $850,000 price tag announced today.”

BACKGROUND

• Luxturna does not fully restore vision, and it’s unclear how long the treatment effects will last. — Washington Post, January 2018
• The independent Institute for Clinical and Economic Review (ICER) found in a draft analysis that a value-based price for Luxturna is a fraction of today’s $850,000 price. — ICER, November 2017, page 55
• “There is no evidence of an association between research and development costs and prices; rather, prescription drugs are priced in the United States primarily on the basis of what the market will bear.” – JAMA, August 2016