Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases

Washington, D.C., November 28, 2017 –  Today, the National Organization for Rare Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill being debated in Congress.  Patients will meet with their Senators, ensuring that their needs are represented, as Congress seeks to repeal or weaken the Orphan Drug Tax Credit as part of the Tax Cuts and Jobs Act.

“The current tax reform bill is bad for rare disease patients,” said Peter L. Saltonstall, president and CEO of NORD, the leading independent nonprofit group representing people with rare diseases.  “Senators should listen to their constituents. The Orphan Drug Tax Credit saves lives, and our community needs the Orphan Drug Tax Credit for any hope of a treatment.”

People who cannot attend the rally are encouraged to participate in a virtual hill day by calling, emailing, and tweeting their Senators, as well as posting videos on social media using the hashtag #SaveOrphanDrugs.  More information is available at https://rareaction.org/saveorphandrugs/.

The Orphan Drug Tax Credit is critical to encouraging drug development for rare diseases.  It is responsible for one-third of all orphan products available on the market today.  Without the Orphan Drug Tax Credit, 33 percent fewer therapies could be developed for rare disease patients going forward, which would be devastating to this community in which nearly 95 percent of the 7,000 rare diseases still do not have a treatment.

“There are 30 million Americans with rare diseases – one-tenth of the population – of whom the vast majority are fighting for their very first treatment,” said Saltonstall.  “We are telling patients: you can use your voice to make a difference.”

Since the Tax Cuts and Jobs Act was released earlier this month, more than 200 nonpartisan patient groups sent a letter to Congress urging policymakers to not repeal the Orphan Drug Tax Credit.  In addition, 36 patient organizations implored the Senate to oppose the weakening of the credit, and 91 patient organizations condemned the House vote to repeal the credit.

Get involved today! Take a moment to participate and check out our resources by visiting our website at rareaction.org/saveorphandrugs.