Action Alert: If Passed, Proposed Tax Plans from Both Houses Will Affect Duchenne Community

Call & Email Your Senators Today!

Both the House & Senate have now released their Tax Reform proposals, each with variations of similar policy impacts and changes that we feel an obligation to alert you to. It is anticipated that both Chambers will move this legislation swiftly and work to complete their votes during the week after Thanksgiving. Time is of the essence.


While PPMD does not typically engage in legislation related to tax reform, these proposals (being referred to as the ‘Republican Tax Plan’) contain elements that will have direct impacts on our community — your family – and others living with complex diseases. This is actually NOT a Republican or a Democratic issue. This is another moment where it doesn’t matter what party you are registered with — but the lens through which we view policies and priorities. And within this context, we are all a part of the Duchenne community. ‘The Duchenne Party’, if you will. Our community has spent two decades creating strong relationships with Members of Congress on both sides of the aisles. Republicans and Democrats who care about our families and the issues that impact us.

Since it is likely that the most recently introduced Senate version of the legislation will be the most influential on the final bill language, we are focusing our outreach efforts on Members of the Senate – and the provisions that are now contained within the Senate’s proposal.

We must reach out to the Senate and let them know how these issues in particular will directly impact us. And we must do so immediately.


While there are many issues within this plan that may be of concern to you through the broader lens of your family and community, these are the issues we need to bring to your attention through the lens of Duchenne:


  • Partially Repeals the Orphan Drug Tax Credit (ODTC)
    • The Orphan Drug Tax Credit was established in the 1983 Orphan Drug Act and has been a critical incentive in bringing industry into the rare disease space. The Senate version contains a complex tax credit formula that will essential create a 50% reduction in the tax incentives currently provided to companies who conduct clinical trials within rare diseases. 


  • A Repeal of the individual Insurance Mandate
    • The Congressional Budget Office estimates that this provision will mean that 13 million Americans will lose insurance coverage over the next 10 years and that insurance premiums in the individual market will increase ~10% each year in that same decade. This is because if fewer younger or overall-healthier people are purchasing insurance, insurance costs overall will go up and the marketplace will continue to destabilize. Today, the annual medical costs associated with Duchenne muscular dystrophy are an estimated $54,270 per patient in the U.S., with the indirect household costs of Duchenne to a family in the U.S. (including lost wages for family caregivers, home modifications for accessibility, transportation, etc) being higher to families living in the U.S. than those in the U.K., Germany, or Italy.  Insurance premium increases are a cost that cannot be added to the financial burden we carry.


These elements of this legislation will immediately impact the financial burden on personal households within our community and threaten to slow drug development and innovation into treatments and cures for Duchenne.

We must reach out and call our Senators today


Consider discussing:

  • How will insurance premium increases impact you and your family?
  • In Duchenne — we have gone from having ZERO pharmaceutical companies in our space in the late 80s to now more than 40 companies conducting more than a dozen human clinical trials. The Orphan Drug Tax Credit is working. We can not afford to dis-incentivize therapy development in Duchenne.


Please call today! Please encourage your friends and family to do the same.

This is not a Republican or Democratic issue.

This is a Duchenne issue.

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