21st Century Cures Act (HR 6) Background
In July 2015, the House passed the 21st Century Cures Act (HR 6) with a bipartisan vote of 344-77. This
omnibus bill realizes a vision for improving biomedical innovation in America. The bill addresses a
variety of challenges and opportunities for the biomedical ecosystem, including many of importance to
the rare disease community. 21st Century Cures was introduced by Reps. Fred Upton (R-MN) & Diana
DeGette (D-CO), and was the culmination of more than a year’s effort of gathering expert input and
listening closely to what the patient community and industry partners need to make rare disease
treatments a reality. It is important to note that though the House bill has passed by a wide margin, the
Senate effort, the “Innovation for Healthier Americans” Act, has yet to be finalized and voted on.
Included in HR 6 were several provisions that were critical to the rare disease community and in
particular, for the patients who suffer from diseases for which there are no available treatments:
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Incentives to increase the number of treatments available to patients, in particular, those made
possible by the OPEN ACT (HR 971) to repurpose drugs for rare disease and the Advancing Hope
Act (HR 1537) to reauthorize the pediatric priority review voucher program at the FDA
Increased funding for the National Institutes of Health & the Food & Drug Administration
Enhancement of the drug development process by including patient perspectives and use of
biomarker data
Support for the development and dissemination of expanded access policies (CURE Act HR 909)
Creation of a neurological disease surveillance program at the Centers for Disease Control
(S 849)
HOUSE TALKING POINTS
If your Representative voted “Yes” on 21st Century Cures: Thank them for their support of the rare
disease community, and let them know how the provisions in the bill can help improve the lives of you
and your family.
If your Representative voted “No” on 21st Century Cures: Politely explain to them how important this
legislation is to the rare disease community (95% of whom have no FDA approved treatment), and that
you hope they can support rare disease-related issues in the future. Explain how the provisions in the
bill can help improve the lives of you & your family.
For more information about the provisions of interest to the rare disease community, you may visit
www.RareAdvocates.org and/or contact Max G. Bronstein mbronstein@everylifefoundation.org
VOTE RECORD HR 6
21st CENTURY CURES
Connecticut:
Larson, John: Aye
Courtney, Joe: Aye
DeLauro, Rosa: No
Himes, James: Aye
Esty, Elizabeth: Aye
New York:
Zeldin, Lee: Aye
King, Pete: Aye
Israel, Steve: Aye
Rice, Kathleen: Aye
Meeks, Gregory: Aye
Meng, Grace: Aye
Velazquez, Nydia: Aye
Jeffries, Hakeem: Aye
Clarke, Yvette: Aye
Nadler, Jerrold: No
Donovan, Daniel: Aye
Maloney, Carolyn: Aye
Rangel, Charles: Aye
Crowley, Joe: Aye
Serrano, Jose: Aye
Engel, Elliot: No Vote
Lowey, Nita: Aye
Maloney, Sean: Aye
Gibson, Christopher: Aye
Tonko, Paul: Aye
Stefanik, Elise: Aye
Hanna, Richard: Aye
Reed, Tom: Aye
Katko, John: Aye
Slaughter, Louise: Aye
Higgins, Brian: Aye
Collins, Chris: Aye
Maryland:
Harris, Andy: Aye
Ruppersberger, Dutch: Aye
Sarbanes, John: Aye
Edwards, Donna: Aye
Hoyer, Steny: Aye
Delaney, John: Aye
Cummings, Elijah: Aye
Van Hollen, Chris: Aye
New Jersey:
Norcross, Donald: Aye
LoBiondo, Frank: Aye
MacArthur, Tom: Aye
Smith, Chris: Aye
Garret, Scott: No
Pallone, Frank: Aye
Lance, Leonard: Aye
Sires, Albio: Aye
Pascrell, Bill: Aye
Payne, Donald: Aye
Frelinghuysen, Rodney: Aye
Watson-Coleman: Aye
Pennsylvania:
Brady, Robert: Aye
Fattah, Chaka: Aye
Kelly, Mike: Aye
Perry, Scott: No
Thompson, Glenn: Aye
Costello, Ryan: Aye
Meehan, Patrick: Aye
Fitzpatrick, Michael: No
Shuster, Bill: Aye
Marino, Tom: Aye
Barletta, Lou: Aye
Rothfus, Keith: Aye
Boyle, Brendan: Aye
Doyle, Mike: Aye
Dent, Charles: Aye
Pitts, Joseph: Aye
Cartwright, Matthew: Aye
Murphy, Tim: Aye
Virginia:
Wittman, Robert: No Vote
Rigell, Scott: Aye
Scott, Bobby: Aye
Forbes, Randy: No
Hurt, Robert: Aye
Goodlatte, Bob: No
Brat, Dave: No
Beyer, Donald: Aye
Griffith, Morgan: Aye
Comstock, Barbara: Aye
Connolly, Gerald: Aye