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Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act

For over a year, PPMD has been working with Congress on landmark legislation called 21st Century Cures. The bill aims to speed the discovery, development, and delivery of therapies for diseases that have an unmet medical need like Duchenne. We have been thankful to Congress for their willingness to meaningfully engage the patient community in the process. This week the House will hold a floor vote on the measure (HR 6.) We need all House members to vote YES to get this bill over the finish line in the House of Representatives.

 

Please take one minute to send your House member an Action Alert telling them to vote YES on HR 6, the 21 Century Cures Act.

 

This bill contains provisions that will:

  • Increase funding for the National Institutes of Health (NIH) & the Food & Drug Administration (FDA)
  • Incorporate the patient perspective into the drug development and regulatory review process (patient focused drug development)
  • Clarify the use of platform technologies - Utilizing early data from trials to shorten follow on trials (such as in exon skipping)
  • Provide new incentives for the development of drugs for rare diseases (OPEN Act)
  • Invest in 21st century science and next generation investigators

 

We are nearly there with this important legislation, and with your help the House will make this promise of a new day in drug discovery a reality. Then it will be on to the Senate...

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Comment by Guillermo Raspa on August 3, 2015 at 2:50pm

Hi everyone!

I wrote senator Bob Menendez (NJ) and he kindly answered that 

"If enacted, this bill would require the Food and Drug Administration (FDA) to disclose whether or not certain patient-focused drug development criteria, including patient population benefit and risk data, patient-reported outcomes data, and perspectives of patients serving on advisory committees, had been appropriately considered as part of the final drug review package.  Hearings and markups of legislation before the Senate HELP Committee are held at the discretion of its chairman."

I don't have technical legislative knowledge, it just sounds like the Senate cannot do anything until the FDA discloses an approval.  Does anybody know something about this?

Regards,

Guillermo (from Argentina, now visiting NJ)

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