More than 200 patient groups have sent a letter to congressional leaders urging them to not end the Orphan Drug Tax Credit as part of the recent tax bill proposals, which they claim would result in one-third fewer treatments for rare diseases.
In the nonpartisan letter to policymakers, the patient groups asked legislators to stop the repeal of the drug tax credit in the current Tax Cuts and Jobs Act, saying it gives hope to almost 95 percent of individuals faced with rare diseases that have no treatment, according to a press release.
“We urge Congress to listen carefully to their constituents and the 30 million Americans with rare diseases,” Peter Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), said in the release. NORD is 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,” Saltonstall said in the release. “We implore the House of Representatives to reconsider.”
Of the 7,000 diseases considered rare in the U.S., only a few hundred have FDA-approved treatments, according to NORD.
NORD has sent over 2,000 letters to Congress in support of the Orphan Drug Tax Credit since Nov. 2, according to the organization.