Proposal to Repeal the Orphan Drug Tax Credit.

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Buried within the draft tax reform proposal released last Wednesday by House Ways & Means Committee leadership is a proposal to eliminate incentives for drug manufacturers to develop therapies to treat and cure the more than 7,000 rare diseases afflicting more than 30 million Americans.

The Congressional Joint Committee on Taxation estimates that repealing the Orphan Drug Tax Credit will save the government $9.1 billion over the next 10 years – but the true cost of ending the program will come in the form of lost hope, continued suffering, and countless lives lost when needed new medicines are not developed.

Read more: http://thehill.com/blogs/congress-b...-government-savings-over-saving#ixzz2vU2j15pO
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A kind member of another forum offered this template to be customized to your own specific situation:

SUBJECT: Request for your support to stop the Repeal of credit for clinical testing expenses for certain drugs for rare diseases or conditions (Tax Reform Act of 2014, Section 1, Title IIV: Excise Taxes, Section 7005)

Dear Congressman X:

I am requesting your support to eliminate the subject Section from the Draft Tax Reform Act of 2014, released by the Ways and Means Committee on 26 February 2014. This repeal would eliminate important tax incentives for pharmaceutical companies to conduct and/or finance research to develop orphan drugs to treat and cure rare diseases, that otherwise have no chance of being developed due to lack of profitability.

The repeal would eliminate current law that provides for a taxpayer to claim a credit equal to 50 percent of qualified clinical testing expenses incurred in testing certain drugs for rare diseases or conditions, often referred to as “orphan drugs.” Expenses taking into account for purposes of the orphan drug credit do not qualify for the general research credit.

There are more than 7,000 rare diseases afflicting more than 30 million Americans. I suffer from one of these diseases, ______. The origins of this disease are still unknown, and individual treatment is, at best, guess work using drug therapies that may only put one in remission or slow down this insidious disease, if one is lucky enough. I don’t doubt that you personally know at least one person that is, or perhaps you yourself are, afflicted with one of these rare diseases. Thus, the draft repeal for tax credit for clinical testing would affect you, me, and our own loved ones.

I can only hope that a cure or effective treatment will be developed in my life time. What is important to me is that we not interrupt the necessary research that will benefit future generations.

Please, be my voice, and the voice of those you know and love, and vote to disallow the repeal of this most important law that provides the only incentive to pharmaceutical companies to develop treatments and cures for rare diseases.

Most respectfully,

 

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Find your reps here:

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I simplified:

Stop Tax Reform Act of 2014, Section 1, Title IIV: Excise Taxes, Section 7005

I am requesting your support to eliminate the subject section from the Draft Tax Reform Act of 2014, released by the Ways and Means Committee on 26 February 2014.

This repeal would eliminate important tax incentives for pharmaceutical companies to conduct and/or finance research to develop orphan drugs to treat and cure rare diseases, that otherwise have no chance of being developed due to lack of profitability.

The repeal would eliminate current law that provides for a taxpayer to claim a credit equal to 50 percent of qualified clinical testing expenses incurred in testing certain drugs for rare diseases or conditions, often referred to as “orphan drugs.” Expenses taking into account for purposes of the orphan drug credit do not qualify for the general research credit.

There are more than 7,000 rare diseases afflicting more than 30 million Americans. I suffer from one of these diseases.

This repeal would significantly limit the chances for a new drug to be developed that would give me my life back. Please do not allow this to happen to me, or to the millions of others who suffer from rare and as yet un-curable diseases.

Sincerely,