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Act Now to Protect Drug Development.


As part of the budgeting process, Congress is discussing cutting back the Orphan Drug Tax Credit for pharmaceutical companies. Most of the drugs in sarcoidosis are not FDA-approved for sarcoidosis, but are repurposed from drugs approved for other diseases. The importance of FDA approval for rare disease patients cannot be understated.  Without FDA approval, we cannot be sure of how a drug might interact with an underlying condition. Even when there is a consensus among clinicians that treat such conditions that these “off label medications” are impactful, insurance companies make access difficult and charge patients higher copays to access these medications.

The Orphan Drug Tax Credit is an important incentive for pharmaceutical companies to investigate treatments for rare diseases, like sarcoidosis. This incentive is particularly important for the many smaller companies focused exclusively on rare diseases.

Below is a sample letter that you can send to your Congressmen and Senators to encourage them to protect the development of new therapies for all living with sarcoidosis and other rare diseases.




I am (NAME).  I live in your district. I am living with a rare, multi-system, complex inflammatory condition called sarcoidosis.  (Include your story about living with sarcoidosis – one paragraph max). To learn more about sarcoidosis, please visit The Foundation for Sarcoidosis Research’s website 

There are currently very few FDA-approved drugs to help treat sarcoidosis. The Orphan Drug Tax Credit is an essential tool to incentivize pharmaceutical companies to develop treatments in the rare disease space and the proposed cuts to this tax credit, to pay for other items in the budget, is a step to balancing the budget on the backs of those of us who are the sickest and most vulnerable.

I know that drug pricing and affordability is a top priority for you. Thank you for your efforts.  But, please know that repeal or reduction of this tax credit is not the path to better, more affordable care.  Repeal or reduction of this tax credit means fewer trials in rare diseases like sarcoidosis – where trials are already scarce and complex. There are already barriers to necessary and life-saving treatments by insurance companies who don’t want to allow access to “unproved treatments” or who use the lack of FDA approval as an excuse to make access available only to those who can pay very high co-pays, and  most importantly, removing this tax credit means loss of hope that new treatments and a cure is possible.

I urge you and your colleagues to reconsider moving forward with cutting or repealing the Orphan Drug Tax Credit.  We need clinical trials in rare disease. Rare disease trials are complicated and expensive. Without supplemental support, many biotechs and pharmaceutical companies will find these trials too financially burdensome and we, the rare disease patients, will be left out in the cold.  Please don’t take away my hope for a better and affordable treatments.  Please protect this tax credit for me and everyone who is suffering with rare and complicated conditions.

To learn more, please read this paper and see the letter signed by 64 national and international organizations urging you to protect this tax credit.

Thank you for your time and consideration.  Please contact me if you would like to discuss more.



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