As previously reported by Liberty Nation, The FDA recently approved a new gene-therapy from Spark Therapeutics, Luxturna, for the treatment of heritable retinal degeneration. The company has now announced the price of what will be the most expensive gene therapy in the U.S. They set Luxturna at $425,000 per eye, according to the press release. 
Retinal dystrophy is a rare disorder that most often begins with nighttime blindness and nystagmus that eventually progresses to complete vision loss. The illness typically impacts both eyes, which would cause the total expense to the patient to sum to $850,000.
Spark is, therefore, attempting to enhance the affordability of their product. The company announced that it was entering an agreement with Express Scripts, the most prominent pharmacy benefit management corporation in the U.S. The contract prevents Luxturna from entering hospitals, where the rates of medications elevate for massive profits. Instead, the procedures will be performed in clinics and elsewhere. They also plan to provide monetary support for those traveling to centers offering the surgery.
Furthermore, the company is discussing plans with Medicare and Medicaid to permit the spreading of payments for the treatment over multiple years and will grant rebates if the operation proves ineffective within a 30-month span. Although the innovative techniques by Spark will allow for broader access to the life-altering medication, Luxturna will likely still prove unaffordable for many.
As we’ve reported before, 10 – 15% of American adults are unable to receive proper care due to the high costs. Steve Miller, the Chief Medical Officer of Express Scripts, sympathized with the financial difficulties those pursuing the therapy may face and voices his hope that future price drops will allow broader access.
Miller does believe, however, that Spark reasonably priced Luxturna, given the small population the product serves and the requirement for the company to make a profit for their work. The condition currently affects 1000 to 2000 Americans, creating a total economic burden of $139 billion. Furthermore, blind individuals have an unemployment rate of 58%, with 29% living below the poverty line.
Luxturna would provide these individuals the ability not only to economically support themselves but to live more freely and reach goals the illness may have previously hindered.
The gene therapy is a one-time process, with physicians injecting a benign virus containing nourishing copies of a specific gene just below the retinas of each eye. Although the surgery does not entirely revive sight, it has shown to improve vision in nearly all subjects tested. The procedure is to become available later this year.
While those with retinal dystrophy await the release of Luxturna, they must contemplate the fiscal implications of restoring vision. The medical industry has increasingly offered life-saving contributions in recent years, but the high costs of such measures prevent all but the wealthy from seeing any benefit.
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