Gene therapy for rare retinal disorder to cost $425,000 per eye

The price of the gene therapy Luxturna will be $425,000 per eye.

Story highlights

  • Luxturna, a one-time treatment, corrects a genetic mutation that can lead to blindness
  • Spark Therapeutics set the price for the gene therapy at $425,000 per eye

(CNN)A one-time treatment with Luxturna, the first US Food and Drug Administration-approved gene therapy for an inherited disorder, will cost $425,000 per eye.

Spark Therapeutics Inc., the Philadelphia-based maker of voretigene neparvovec, announced Wednesday in a statement that it reached an agreement in principle with Harvard Pilgrim and affiliates of Express Scripts to make the one-time treatment available to patients with a rare genetic defect that often leads to blindness.
    The mutation affects both eyes, usually at the same pace, so most patients would need treatment for both eyes, a Spark Therapeutics spokeswoman said.
    In some cases, the gene therapy will be available under an "outcomes-based rebate arrangement." The company also stated that its proposal to the Centers for Medicare and Medicaid Services, the government program that covers about 100 million Americans, would allow installment payments for the drug.
    "For a one-time therapy, like Luxturna, a non-traditional payment and distribution model is necessary to ensure needs of all parties -- patients, payers and providers -- are addressed," said Jennifer Luddy, a spokeswoman for Express Scripts.
    At least one patient advocate disagrees.