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The MSA Coalition respects the views of all members of our groups. Given the relevance of the following issue to the MSA community, we are sharing this important information. Individuals are encouraged to research facts and act accordingly based on personal beliefs in consideration of action on this item.

The MSA Coalition recently signed on to letters sent by the National Organization for Rare Disorders (NORD) to House and Senate leaders opposing proposed changes to the Orphan Drug Tax Credit. The letters urge Congressional leaders to oppose the changes to the Orphan Drug Tax Credit (ODTC) that were included in the House Ways and Means Committee’s portion of the Build Back Better Act. If included, the new provision would negatively impact the ability of rare disease patients to obtain an FDA approved drug that has been proven to be safe and effective for their specific condition.

Specifically, the Ways and Means portion of the Build Back Better Act includes a provision that would curtail the Orphan Drug Tax Credit for qualified clinical testing expenses by removing this critical incentive for all but the first approved orphan use of a drug. The tax credit would therefore be available for only the first approved orphan use of a new drug, and not for any subsequent use, thus diminishing research into rare disease uses. Over 90% of rare diseases lack an FDA-approved treatment indicated for the specific rare disease. Each time a new orphan use of a drug is added to the label of a drug, more rare disease patients receive assurance that the drug is safe and effective for them.

Here are links to the NORD letters:

Senate Letter:…/ODTC-Letter…

House Letter:…/ODTC-Letter…

Here is the NORD link that will help you contact your members of Congress if you wish to do so:

Please remember that everyone has different views, and any and all comments should be careful to maintain respect for the views of others.