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Mar. 6, 2014

TOPIC: Advocacy, Featured News, Patients & Members

NORD Calls Proposed Repeal of Orphan Drug Tax Credit “Anti-Patient and Anti-Public Health”

Posted by Mary Dunkle

More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax Credit (ODTC).  The deadline to sign on is cob Friday, March 7.  NORD will send the letter to the House Ways and Means and Senate Finance committees.

In addition to the letter, NORD has issued a statement in which it says the repeal of this important tax credit would be “anti-patient and anti-public health”.

Rare disease patient organizations wishing to add their names to NORD’s letter should write to by 5 p.m. ET on Friday, March 7.

The text of NORD’s position statement on this topic is as follows:

Washington DC, February 27, 2014—-A proposal made public by Rep. Dave Camp (MI) to amend the Internal Revenue Code of 1986 would repeal the Orphan Drug Tax Credit, one of the most successful tax credits ever passed by Congress, and one that has literally saved thousands of lives.

The National Organization for Rare Disorders (NORD) and its 450-plus members speak for patients everywhere, as well as for the medical and research communities, in opposing this repeal.

Repeal of this tax credit would be an anti-patient, anti-public health policy.

Repeal of this provision would squelch medical research and innovation. Repeal would remove one of the major incentives to finding cures and treatments for some of the most challenging diseases.

The credit allows drug manufacturers to claim a tax credit of 50% of certain research costs for orphan drugs (drugs for diseases affecting 200,000 Americans or fewer). Due to this tax credit, as well as other incentives, more research is taking place for orphan drugs than ever before. A third of the new drugs being approved by FDA each year are for orphan drugs that benefit from the tax credit. Many if not most of these new drugs may never have been developed if this tax incentive did not exist.

The vast majority of people with a rare disease pray every day for medical progress. About 7,000 rare diseases affect 30 million Americans. Only a few hundred rare diseases have an approved drug.

People in this country with rare diseases deserve to be treated with respect and to retain the hope that, someday, a cure or better treatment will be developed for them. Repealing this tax credit is a signal from the Congress that new treatments for people with rare diseases are unimportant. NORD appeals to Congress to block this proposed repeal and to keep the light of hope on for so many who desperately need life-saving interventions.

Orphan drugs don’t serve just patients with rare diseases. Patients with more common diseases have benefited from the advancements made in orphan drug development. Access to these treatments has saved medical costs by keeping people healthy and out of the hospital and emergency rooms. New treatments promise to save even more.

We call on our colleagues in the medical, research and investment communities to express their strong opposition publicly and vehemently to repeal this proposal.

NORD and the entire rare disease community urge Mr. Camp to reconsider the implications of this section in his proposal, and to keep patients and public health first.

4 Responses to “NORD Calls Proposed Repeal of Orphan Drug Tax Credit “Anti-Patient and Anti-Public Health””

  1. Linda Cuddihy says:

    My daughter has relapsing polychondritus, for which there is no known cure and only one primary medical group researching this devastating disease. Please do not take the tax credit away. New drugs and critical research is the only hope we have that one day a cause and cure will be found.

    Thank you for this forum.

  2. Mary Dunkle says:

    Individuals who would like to write to their elected officials on this topic can personalize a letter NORD has created and submit it to their representatives through the NORD website:

  3. Melchor G Pavon says:

    I’m a volunteer with the MGFA, New Orleans Support Group and we support NORD’s efforts in opposing the proposed repeal of the Orphan Drug Tax Credit (ODTC).

  4. Ricki Zipkin says:

    I have FMD and quite possibly Ehlers-Danlos. How can any of you sleep at night, when you are considering pulling the rug out from so many of us? M disease has not real treatment, and no cure. I am begging you to reconsider the decision to repeal the “Orphan drug tax credit”. Thank you