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Good news for Creating Hope Act, May 21, 2015

June 2, 2015

Friends:

Today, the 21 st Century Cures Act was voted out of the Energy and Commerce full committee and with it, Section 2152 ­­ the reauthorization of the pediatric priority review voucher program of the Creating Hope Act.

As you may recall, the Creating Hope Act creates a financial incentive for pediatric rare disease drug development. Its success has exceeded our expectations with three vouchers and a sale price for a voucher of $125M.

We want to thank Congressmen G.K. Butterfield, Michael McCaul, Chris Van Hollen, Michael Burgess and the FDA for their leadership and support.

Our next efforts will be directed towards the Senate. We hope to extend the sunset provision of the Creating Hope Act and ensure that the number of vouchers issued does not dilute the benefits of the program for children with rare and life threatening diseases.

We have more to do ­ namely to continue the push for the Kids’ Innovative Drugs (KIDS) Initiative. This would dramatically increase access to new adult cancer drugs for kids, with funding.

The KIDS Initiative would update the Pediatric Research Equity Act (PREA). PREA requires companies to undertake pediatric drug development when kids with the same disease as adults are treated with the same drug. However, cancer drug development is now by molecular target. It doesn’t make sense for PREA to be applied only by disease.

Here’s a better explanation by a brilliant public speaker, Ms Brooke Hester Today, Jacob would be 17. We will celebrate with cake, balloons, and the hope that this new legislation will lead to better therapies for sick children. Happy birthday, Jacob. Thank you again for all your support. Warmest regards, Nancy

Thank you again for all your support.

Warmest regards,

Nancy

 

PDF:  Email Blast 052115

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