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More Than 200 Patient Groups Call On Congress to Reinstate the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act

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Thursday, November 09, 2017

WASHINGTON - More than 200 nonpartisan patient groups sent a letter to Congress urging policymakers to not repeal the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act.

The proposed change to repeal the Orphan Drug Tax Credit would result in one-third fewer new treatments for rare diseases going forward1. Of the approximately 7,000 diseases considered rare in the U.S., only a few hundred have FDA-approved treatments2. The Orphan Drug Tax Credit gives hope to the nearly 95 percent of individuals with rare diseases without a treatment that one day they too with have a treatment, or even cure.

"We urge Congress to listen carefully to their constituents and the 30 million Americans with rare diseases," said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonpartisan and nonprofit patient advocacy group representing all people with rare diseases.

"The Orphan Drug Tax Credit is one of the most important incentives for spurring the development of therapies for individuals with rare diseases, and its repeal is wholly unacceptable. We implore the House of Representatives to reconsider."

NORD said rare disease advocates have sent more than 2,00 letters to Congress in support of the Orphan Drug Tax Credit since the release of the Tax Cuts and Jobs Act on Nov. 2.

The full text of the letter to Congress and the signers can be viewed here.

About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 260 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community. www.rarediseases.org.

1 https://rarediseases.org/assets/files/white-papers/2015-06-17.nord-bio-ey-odtc.pdf
2 http://cdn.rarediseases.org/wordpresscontent/wp-content/uploads/2014/11/NRD-1008-FactSheet_5.pdf

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