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A New York State panel has recommended that officials seek a supplemental Medicaid rebate for a pricey rare disease drug sold by Biogen (BIIB), marking only the third time such a move was proposed because a medicine may cause the state Medicaid program to exceed a cap on drug spending.

In a 14-to-0 vote last Thursday, the state’s Drug Utilization Review panel agreed that a rebate should be pursued for Spinraza, which is used to treat muscular spinal atrophy, an often-fatal genetic disease affecting muscle strength and movement. In its deadliest form, referred to as Type 1, the disease causes children to die by the time they turn 2 years old.


The list price for the initial year of treatment with Spinraza is $765,000, and $382,500 a year thereafter, before rebates or discounts. By law, for instance, state Medicaid programs automatically get a 23.1% discount off list prices. In addition, for every dollar a state spends on Medicaid, the state receives a certain percentage reimbursed by the federal government.

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