NHC Provisions Included in 21st Century Cures Initiative Discussion Draft

Washington, DC (January 27, 2015) – A discussion draft of legislation being proposed by the House Energy and Commerce Committee’s 21st Century Cures initiative includes four provisions championed by the National Health Council. The draft was released this afternoon, and a copy is attached.

After receiving a copy of the discussion draft, NHC Chief Executive Officer Myrl Weinberg issued the following statement:

“We applaud the efforts of Chairman Upton, Congresswoman DeGette, and the other members of the committee for reaching out to the patient community, for listening to our concerns, and for acknowledging that people with chronic conditions can bring to the table workable, pragmatic solutions that will benefit all of society.

“We believe that the 21st Century Cures draft is a strong step in the right direction to advance our health care ecosystem. It will increase the number of high quality treatments and cures for people with chronic diseases and disabilities. The draft is considered a work in progress, and we look forward to working with the patient community and Congress to support and strengthen the language as it works its way through the legislative process.”

Among other issues, the discussion draft addresses

  • Enhancing the development of new treatments for unmet medical needs through the creation of dormant therapies, which will encourage the development of promising treatments that lack sufficient patent protection: Dormant therapies is a concept created by the NHC and the backbone of the MODDERN Cures Act.
  • Promoting patient engagement throughout the drug development process to better incorporate patient preference: For several years, the NHC has brought together the various health community stakeholders to examine what it means to “engage patients” in the life-span of new therapies.
  • Allowing for greater sharing of patient data with researchers: NHC patient-focused research has shown that people with chronic conditions want, within certain parameters, to share their medical information with researchers with the hope of finding better treatments and new cures. They believe sharing of data could ensure their children and grandchildren will not have to live with debilitating illnesses.
  • Streamlining institutional review boards (IRBs) to assist in collaboration across academic institutions: NHC believes that removing administrative burdens of multi-site clinical research by streamlining the IRB approval process will lead to more effective and efficient drug development.

Nancy Hughes
Email: nhughes@nhcouncil.org
Cell: 703-608-9709