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Cost and Coverage of Gene Therapies

While new gene therapies seem promising, they are also expensive and getting health insurers to pay for them can be time consuming, the Wall Street Journal reports.

Spark Therapeutics' Luxturna, which was approved last December to treat retinal dystrophy, has a sticker price of $425,000 per eye, which, Stat News said at the time, made it the most expensive drug in the US.

Krista Soto, whose son Caspian was one of the first people to be treated with Luxturna, tells the Journal that it took a lot of back-and-forth with their insurance company to get the treatment covered. In the end, the insurance company said it would cover it and Spark offered to pay the $4,000 in out-of-pocket expenses. "It was a really long process," Soto tells the Journal. Oregon Health and Sciences University, where Caspian was treated, has set up a five-person team to help get insurance coverage, it adds.

Last January, the nonprofit Institute for Clinical Evaluation and Review said that Luxturna is priced too high to meet cost-effectiveness standards, as its long-term benefits are not yet clear. But ICER's David Rind tells the Journal that they evaluated it from a healthcare point of view. "This therapy may well be priced too high, but it would be a hard argument to deny it to children who are going blind," he says.

The Journal adds that Luxturna is offering rebates if the treatment doesn't work and to pay out-of-pocket costs.

It notes that similar treatments are in development for other eye conditions as well as for hemophilia and others. David Wilson, director of the Casey Eye Institute at OHSU, adds that such gene therapies could soon be common.