Price of new genetic therapy for blindness set at $850K

Price of new genetic therapy for blindness set at $850K
© Spark Therapeutics

A breakthrough genetic therapy for a rare form of blindness will cost $850,000 per patient, its maker announced on Wednesday.

Luxturna's price is less than what many analysts and outside investors expected, and commercially insured patients likely won't have to pay for the treatment.

Still, the price tag is higher than any other such treatments on the market.

Spark Therapeutics, its maker, said that Luxturna is priced fairly, noting it is a one-time treatment and that treatments for rare diseases are usually expensive because of small patient populations. The company is also offering new ways for patients and insurers to pay for the drug.

Spark said it will offer rebates to insurers if the treatment doesn’t work. The firm said it has entered into an agreement with Massachusetts-based insurer Harvard Pilgrim to offer a partial refund if the drug doesn’t work in the first three months, and is in discussions with other companies as well. 


Spark also said that is working with the federal government on a proposal that would allow insurers and patients to pay for the treatment over several years, rather than all at once. As a result of current government drug price reporting rules, the company cannot offer an installment plan without being forced to sell the drug to Medicaid at an unsustainably low price.

“We believe that access to therapy is a shared responsibility among Spark Therapeutics, payers, health benefit providers, physicians and treatment centers,” Spark CEO Jeffrey Marrazzo said in a statement.

Critics, however, say Luxturna's price is still too high, adding that people without insurance and those who have high deductibles will face the brunt of the cost.

“Luxturna offers hope to hundreds of patients. But … what is a fair price that will maximize affordability and accessibility and provide a reasonable return for the drug?" David Mitchell, president and founder of the advocacy group Patients For Affordable Drugs, asked. "The answer to that is certainly not the $850,000 price tag announced today." 

Luxturna was approved by the Food and Drug Administration in December to treat a rare, inherited retinal disease that can lead to blindness.

The company estimated that between 1,000 and 2,000 people in the U.S. have vision loss due to the mutation the drug is intended to treat.

--This report was updated at 2:08 p.m.