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Nov. 2, 2017

TOPIC: Advocacy, Featured News, Patients & Members

NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)

Posted by Christina Jensen

Washington, D.C., November 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the release of the Tax Cuts and Jobs Act, and the proposed repeal of the Orphan Drug Tax Credit (ODTC):

“Today, the House Ways and Means Committee released a draft of the Tax Cuts and Jobs Act, a comprehensive proposal to reform the U.S. tax code. Within this proposal, the Committee proposes to repeal the Orphan Drug Tax Credit.

The Orphan Drug Tax Credit is one of the most important incentives for developing therapies for individuals with rare diseases, and its repeal is wholly unacceptable. A repeal of the Orphan Drug Tax Credit would directly result in 33 percent fewer orphan drugs coming to market, an unprecedented decrease in the development of these life-improving therapies.

The rare disease patient community, comprised of 30 million Americans, emphatically supports this life-saving tax credit, as evidenced by a letter sent to Congressional leaders signed by over 140 rare disease patient organizations in support of the ODTC. Within the last week, rare disease advocates have sent over 500 letters to Congress in support of the ODTC, and many others have called their elected representatives to show their support.

Over 95% percent of individuals with a rare disease are still waiting for a treatment. Now is not the time to move backwards. We strongly oppose the proposed repeal of the Orphan Drug Tax Credit within the Tax Cuts and Jobs Act, and we implore the House of Representatives to reconsider.”

Tell Congress to Oppose the Repeal of the Orphan Drug Tax Credit!
TAKE ACTION NOW: Email or Call your Senators and Representative Now!

33 Responses to “NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)”

  1. jonathan tesser says:

    This is a personal issue for me as I am one who is suffering from a rare form of lymphoma. Repealing the Orphan Drug Tax Credit will leave me and others in a similar situation facing a potentially dire future that no minimal middle-class tax cut can justify. This repeal should be removed from the tax bill.

  2. Maria Cozzo Colosi says:

    Please help those of us with Orphan diseases. Don’t repeal the law!!!!

  3. Zack Reynard says:

    Oppose the repeal of the Orphan Drug tax credit!

  4. Maureen Saldarini says:

    I oppose the repeal of this credit. Please represent my vote

  5. Raffelle St John says:

    Thank you for cleaning up so must wasteful spending in our government, however, I pray that you would rethink the Orphan Drug Tax Cut. If it were not for funds from this tax credit, my sister would probably not be here, or would be having transfusions every four weeks. A rare diseases could hit you or a loved one and you would see how valuable these break through drugs are! This fund is NOT being wasteful! Thank you!

  6. Lisa says:

    Please oppose the Repeal of the Orphan Drug Tax Credit. How can this even be a consideration? If family members of these House Reps got a rare disease, they’d understand better how important this credit is.

  7. Wanda Huskins says:

    As a patient with Waldenström’s Macroglobulinemia I know this tax incentive has brought forth the necessary research to keep me alive. Without it I fear research into this orphan disease will stop.

  8. Charlotte Berisford says:

    You can’t do this – these people with rare diseases count on these drugs and most of us can’t afford most of them. Don’t Kill Us for Money!

  9. Please DO NOT end this tax credit!!! My husband has been fighting a Non-Hodgkin Lymphoma called Waldenstroms Macroglobulineamia for 13 years and just ONE drug has been discovered and approved for this disease. There are so many more thousands of people fighting this, and we get NO FEDERAL FUNDING for research!! Please DO NOT axe this tax credit PLEASE.

  10. Annette Feigenbaum MD says:

    This would be a travesty!

  11. Marilyn Hess says:


  12. Nick Xeros says:

    Way to go politicians. It affects 30 million people. This is unacceptable

  13. Jenny Goings says:

    Please keep tax credits for research on rare diseases. Lives depend on it.

  14. Sandra frost says:

    My daughter has a rare disease and we are anxiously awaiting a potential new drug to help her. Please DO NOT take incentives away from the drug companies for developing these treatments , right now there is NO help

  15. Laura Soule says:

    My husband has a rare bone cancer called Chordoma. This cancer has a very high recurrence rate. The current treatment is surgery and radiation therapy. There are no chemotherapy or immunotherapy drugs available…YET. Patients with this cancer really need drugs that will treat this disease. Please do not eliminate this tax credit. Thank you.

  16. We proudly put our name on this Petition. American Multiple Endocrine Neoplasia Support is a nonprofit dedicated to individuals who have this genetic mutation which causes tumors to grow on endocrine glands.

  17. Jody O'Connor says:

    Please oppose the repeal of this tax credit! Many families and children will suffer.

  18. Allison West says:

    Please do not repeal this incredibly important law. Tens of thousands of people are afflicted with rare diseases. Science for one disease, can help many.

  19. Julie Engelken says:

    As a person battling one of the rarest brain cancers, Clival Chordoma, I am nearing the end of current treatments and will be needing new, innovative treatments in the future. We cannot go backwards when we are on the cusp of finding the drugs that will stop these cancers!

  20. Hugo Dwyer says:

    I support efforts to protect the Orphan Drug Tax Credit and to stop repeal of this act in the Tax Cuts and Jobs Act. American lives and American jobs depend on keeping this tax credit.
    Certainly there are better things to cut from the proposed tax bill than a program that can save lives.

  21. Dina Blummer says:

    I whole heatedly support the ORPHAN DRUG TAX CREDIT. I am asking for you support. I’m a parent of a 38 year old daughter who has a very rare bone disorder for which there is not YET a cure or significant treatment. Do not force or researchers to cut back or give up on their diligent work to find help for her and millions of others who live their lives in pain. Let’s keep everyone productive, please!

  22. Denise says:

    Oppose the repeal !

  23. Freda Lovell says:

    So, if your child, wife, Mother Dad, was in this pickle what would you do, oh not to worry you have the money to bribe the RIGHT people for the drug just for your needs. Thats how GREED works these days, who has the most money and power and who is a politician who can do someone a favor so that someone will do them a favor in the long run. Bribing, we know how it works and it doesn’t matter if you are a Republican or a Democrat both parties play this game and you leave the citizens of your own countries sitting out here like guinea pigs to die we are on to your games maybe we should take up arms walk up to the Capitol Building and take our Country back over, wjat left and take it all over from all of you!!! YOU ALL ARE CROOKS.

  24. Tricia Svejda says:

    I have suffered with CRPS for 4 years due to nerve damage from a surgery to my right ankle. Now I am on disability and barely able to work. The surgeon left the practice and I was unable to find him. Please help!

  25. Courtney Ditzler says:

    My daughter has a rare, life-threatening, currently undiagnosed medical condition. When doctors do determine what is causing her symptoms, an orphan drug may be her only hope. Please don’t turn your back on scientific advancement, and please don’t turn your back on my precious child.

  26. Abigail West says:

    Please oppose this repeal!! People with Friedreichs Ataxia are counting on you!

  27. Bonnie Collins says:

    I myself have a rare disease and my youngest daughter has two. Please don’t take this tax away because the public knows you can take money away from other countries instead of our own .

  28. Rich Garcia says:

    I have CRPS an extremely rare, incurable, horrifically painful disease. It has taken a lot from me. Please so not repeal the orphan drug act. If it is gone, I will truly have no hope for a cure.

  29. Ellyn Parsons says:

    There are around 7000 types of rare diseases including cancers. Do not cut funding for genetic research for cures. Our children and grandchildren depend on you.

  30. Joseph Meyerson says:

    I have a ‘ one in a million’ rare disease, (literally) and depend on further development of orphan drugs for a cure. As a SSDI CAL syndrome designee, my expected functional live span is not going to make it without experirmental leaps by drug companies otherwise financially unable to target 1,000 living patients in North America at any one time. Thank you for your consideration.

  31. John says:

    Republicans are destroying families of patients with rare disease. This tax bill is outrageous and unacceptable!!!

  32. Marilyn B Saul says:

    Depriving people who have “orphan” diseases of research into
    treatment for their horrific conditions is abominable. What do you actually gain from this discriminatory policy? Shame on you all – but most of all, Mr. Trump, GET EDUCATED! Your miserable ignorance directly hurts people, and we’re tired of it!

  33. Jill Connolly says:

    Just so sad that the only life the Republicans value is that of the pre-born.