Fight for Orphan Drug Tax Credit Wages on as NORD Plans Rally on Capitol Hill

Mathew Shanley

Once again, the National Organizations for Rare Disorders (NORD) is fighting for the rare disease community. Today, NORD is gathering advocates from across the country in an attempt to save the Orphan Drug Tax Credit (ODTC).

The group will assemble at Capitol Hill for a rally with the intention of defending the estimated 30-million Americans who would be negatively impacted by the elimination or alteration of the ODTC. NORD, the leading independent nonprofit group representing people with rare diseases, will hold a press briefing and meet with Senators with the goal of convincing Congress not to pass a legislation that harms the Credit or rare disease patients.

Both the House and the Senate are currently reviewing the future of the Orphan Drug Tax Credit as part of the Tax Cuts and Jobs Act. The House has proposed repealing the ODTC altogether, and the Senate has suggested cutting it in half, both of which would limit those who would qualify for it, significantly weakening its power.

The ODTC is one of the financial incentives in the Orphan Drug Act, and it encourages the development of treatments for rare diseases. The Act was signed into law in 1983, and when it was, the United States became the first country in the world to provide incentives for developing treatments for uncommon conditions. Two months ago, NORD and more than 200 other patient-focused organizations sent a letter to Congress to express their support of the inducement.

In a 2015 study, it was concluded that one-third fewer orphan products would be developed if the tax credit did not exist.

Per NORD, in the decade before the passing of the Orphan Drug Act, only 10 therapies were developed by the pharmaceutical industry to treat rare diseases. In the 34 years since the Act was signed, however, more than 3,500 potential treatments have been designated as an orphan drug, and more than 500 orphan therapies have been approved by the FDA.

"The current tax reform bill is bad for rare disease patients," said Peter L. Saltonstall, president and CEO of NORD in a press release. "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."

"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."

For those who are looking to take action, but can’t make it to Washington D.C. for the rally, NORD is providing a number of other ways to participate, including a script to follow during a call, letter or email to Congress and graphics to share on social media.

This morning, NORD published the following video featuring Abbey Meyers talking about the impact that the ODTC has had on the rare disease community, and the impact it would have if abolished or reformed.

For more from advocacy organizations within the rare disease community, follow Rare Disease Report on Facebook and Twitter.
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