Two shots, if you’re doing both sides:
A transformative genetic treatment for a rare, inherited form of blindness will come with a price tag of of $425,000 per eye, or $850,000 for both, said Spark Therapeutics Inc., the tiny biotechnology company that is bringing the therapy to market.
Since Spark’s Luxturna was approved by the U.S. Food and Drug Administration last month, speculation over the price has grown as it became clear the therapy would be one of the first in a wave of medicines that yield remarkable results after a single treatment — and would carry a commensurate cost.
No quantity discounts, apparently.
Luxturna (Voretigene neparvovec) is one of those few pharmaceuticals for which the trade name and the generic name have roughly equal plausibility as a name for a minor Star Trek character.
There are admittedly not many patients for whom this stuff is indicated:
Leber’s congenital amaurosis, or biallelic RPE65-mediated inherited retinal disease, is an inherited disorder causing progressive blindness. Voretigene is the first treatment available for this condition. The gene therapy is not a cure for the condition, but substantially improves vision in those treated. It is given as a subretinal injection.
Now: is it worth $850,000 to not be blind anymore?
In an agreement with the Boston-area insurer Harvard Pilgrim Health Care, Spark will get the full price of treatment up front. If patients don’t get an immediate benefit — measured at 30 days, or a long term one — measured at 30 months, Spark will have to give some of the money back in a rebate.
There’s a new wrinkle.