Public comments


Draft 21st Century Cures bill continues to elevate the role of patients

The House of Representatives Energy and Commerce Committee just released a bipartisan discussion draft of the 21st Century Cures legislation. It’s half the length of the original draft issued by Chairman Fred Upton in January, and it reflects substantial input from all stakeholders. With expanded support for the National Institutes of Health (NIH), greater sensitivity to the regulatory frameworks of the Food and Drug Administration (FDA), and a clear emphasis on including patients in implementation, it represents an important step forward in the legislative process.

 Key updates provided in this draft include:

  • authority for predictable NIH funding levels over the next three fiscal years;
  • more specific opportunities for patients and patient advocacy organizations to shape its implementation, particularly as participants in proposed boards and councils; and
  • an emphasis on patient-focused drug development that allows for greater opportunities and prioritization of patient experience data.

Support for this draft from three Democratic members of the committee – Representatives Diana DeGette, Frank Pallone, and Gene Green – signals success in the pledged effort by both parties to reach bipartisan engagement. Placeholder language and an invitation from Committee staff indicate there is still more work to do before bill language is formally introduced. A hearing set for tomorrow, April 30, will give more insights into the path forward from the members of the Committee as well as NIH and FDA leadership.

 Francis Collins quoteIn his remarks at the Milken Institute’s 2015 Global Conference on Monday, April 27, NIH Director Francis Collins emphasized the need for predictable funding to match the unparalleled scientific opportunity at hand. With the proposed authorization, the Committee has responded to this call.

FasterCures has been an active participant in the 21st Century Cures Initiative since its launch a year ago. We are working to fully absorb the details of the latest proposal and will share further analysis and comment in the coming days. Onward!


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