By Julia Jenkins, Executive Director of the EveryLife Foundation for Rare Diseases.

This Friday during the RARE Patient Advocacy Summit, Rare Disease Legislative Advocates will unite with Global Genes and rare disease advocates across the country in a day of action to urge the U.S. Senate to make medical innovation a priority.

Please join us by calling both of your Senators and engaging them on Twitter with the hashtag #Cures2015. You can find a phone script and sample tweets here, and a list of phone numbers and Twitter handles for all 50 Senators here. You’ll even find a sample Facebook post to encourage your friends and family to take action.

As you may know, the House of Representatives passed the 21st Century Cures Act by a wide bipartisan margin in July. The Act was the result of more than a year of roundtable discussions, hearings and white papers which solicited input from patients, healthcare providers, academia, the biopharmaceutical and medical device industries, and other stakeholders. The rare disease community was actively engaged in this effort, and we were pleased that many of our suggestions were incorporated in the legislation.

The 21st Century Cures Act contains vital provisions that benefit the rare disease community and all patients in need of lifesaving treatments including:

  • Nearly $9 billion in new funding for the National Institutes of Health and $550 million for the Food and Drug Administration over five years
  • New incentives to dramatically increase the number of treatments available to rare disease patients, including the OPEN ACT (to provide incentives to repurpose major market drugs for rare diseases) and the Advancing Hope Act (to reauthorize the pediatric disease priority review voucher program)
  • Enhancements to the drug development process by including patient perspectives and the use of biomarker data
  • Requirements for public dissemination of expanded access policies
  • Creation of a neurological disease surveillance program at the Centers for Disease Control & Prevention

Despite widespread public support for 21st Century Cures and passage by a strong vote of 344-77 in the U.S. House of Representatives, the Senate has not expressed a sense of urgency in advancing its companion effort entitled, Innovation for Healthier Americans.

We cannot allow the Senate to stall this critical effort. Our community must unite and urge the Senate to prioritize cures, as rare disease patients cannot continue to wait for desperately needed new treatments.

A delay in legislation is a delay in new rare disease treatments. Together, we can spur the Senate to advance this important legislation.

 

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