Opinion: Cutting the orphan drug tax credit would take away my day in the sun

In the Republican-led campaign to reform the U.S. tax code, the tax incentive for making orphan drugs is on the chopping block. The House bill eliminates this credit, while the Senate bill decreases it by about half. Both versions worry me and likely the millions of other Americans living with orphan diseases who are waiting, often in vain, for effective therapies.

The Orphan Drug Act, which became law in 1983, provides incentives, including tax credits, to ease the burden of developing drugs for rare diseases. To date, it has aided in the approval of more than 500 orphan drugs in the U.S., a large improvement compared to just 10 new drugs for rare diseases approved in the decade before 1983. Ernst and Young, an independent accounting firm, has estimated that eliminating these incentives could decrease the number of drugs developed for rare diseases by 33 percent.