Rare Disease Report

Cures Now During Lame Duck

NOVEMBER 14, 2016
As the lame duck session starts, I hope the Washington Post was right – it can be used to save lives. Although Members ideals might be different, we have the opportunity to work together for the common good to help save precious lives by passing 21st Century Cures.
I think you need to go back to where this legislation started, with we the people. It takes the ideals of many blended together to create meaningful, innovative legislation.

21st Century Cures was created by the people, for the people. Democracy at its best. Two years was spent collecting input from all the stakeholders – patients, caregivers, advocacy organizations, researchers, clinicians, industry, and government. Roundtables were held across the country. Four drafts were released and all stakeholders were able to provide input and submit guidance. It is why this bipartisan bill passed committee unanimously and the House by an overwhelming majority 344-77.

The bill will help accelerate the discovery, development and delivery of new treatments and cures. It encourages that the patient perspective is at the core of all aspects of the drug development process. It will modernize clinical trials. It will provide funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). As well as the Orphan Product Extensions Now Accelerating Cures and Treatments Act (OPEN ACT), which will repurpose drugs for rare diseases.

For the last 16 months the bill has been stalled. In that time, many lives and precious moments have been lost. Moments celebrating babies’ first steps, another candle in a cake, or a kiss confirming vows. Moments that should not be lost, but moments that should be celebrated.

My hope is that all Members will UNIFY and do what is in the best interest of our country – saving more lives.

We will all be a patient someday. Patients can’t wait for treatments and cures. Time is not on our side. Please show us America cares and wants to be part of the solution. Please, listen to the American people, join our call to action, and help us get #CuresNOW.

A video by the Everylife Foundation about the importance of passing the 21st Century Cures ACT featuring my son is shown below.

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