Washington summary May 2017

Health Care Reform

On May 4, the House passed HR 1628, the American Health Care Act (AHCA) by a vote of 217-213. The bill would replace the current Affordable Care Act (ACA, or Obamacare).

Senate Majority Whip John Cornyn (R-TX) was one of the first to state that the Senate would draft its own ACA replacement bill. The following group is meeting to write the initial language of the Senate bill.

Mitch McConnell (R-KY), Majority Leader
John Cornyn (R-TX), Majority Whip
John Thune (R-SD)
John Barrasso (R-WY)
Orrin Hatch (R-UT), chairman of the Finance Committee
Lamar Alexander (R-TN), chairman of the HELP Committee
Mike Enzi (R-WY), chairman of the Budget Committee
Ted Cruz (R-TX)
Pat Toomey (R-PA)
Rob Portman (R-OH)
Tom Cotton (R-AK)
Cory Gardner (R-CO)
Mike Lee (R-UT)

Other important players may include Sens. Susan Collins (R-ME), Lisa Murkowski (R-AK), Rand Paul (R-KY), and Dr. Bill Cassidy (R-LA).

At the time of this writing, the Senate has not indicated if it will hold hearings on its ACA replacement bill or when it may take up the legislation.

FY17 NIH Funding

Congress approved and the President signed the FY 17 Consolidated Appropriations Act (HR 244, PL 115-31). The law increases NIH spending by $2 billion, primarily for Alzheimer’s, cancer research, Precision Medicine Initiative, and the BRAIN initiative.

Trump Administration

On May 9, the Senate by a vote of 57-42 confirmed the nomination of Dr. Scott Gottlieb to head the FDA. Now, Dr. Gottlieb will implement the 21st Century Cures Act and play a role in the PDUFA VI authorization.

FY18 Appropriations

In March, the administration released its FY18 budget proposal. The budget request would reduce total HHS funding to $69 billion, nearly 18 percent lower than the current year. The administration requested $25.9 billion for NIH, a reduction of $5.8 billion from current levels. In addition, the administration proposes to reorganize the 27 institutes and centers within NIH. Finally, the original budget calls for changing FDA user fees to add $1 billion to FDA’s budget and for improving FDA efficiency. Congress may take up these FDA changes during its consideration of PDUFA VI legislation or the FY18 appropriations bill for FDA.

The $2 billion increase that Congress approved for FY17 indicates that the suggested budget cut for NIH has little support on Capitol Hill. In response to a request for public input, the PKD Foundation asked the House Appropriations Committee for an increase in funding in FY18 for NIDDK in general and for PKD research in particular. A similar request was sent to the Senate Appropriations Committee. It remains important for PKD advocates to press Congress for additional FY18 funds for NIDDK in general and PKD research in particular.


On May 11, the Senate HELP Committee by a vote of 21-2 approved S 934, the FDA Reauthorization Act. The bill reauthorizes for five years the user fee system for prescription drugs (PDUFA), medical devices, and biosimilars. These user fees fund a large part of important FDA operations. The bill also makes several other changes to the FDA. The changes would:

  • Increase scientific expertise within the FDA;
  • Improve the use of real-world evidence in the regulatory decision-making process;
  • Use the voice of patients in the product development process;
  • Enhance the use of biomarkers in the drug development process;
  • Improve the development of combination products; and
  • Harmonize international standards.

On May 18, the House Energy and Commerce Help Subcommittee approved its version of the FDA/PDUFA bill (HR 2430). The full Committee should take up this legislation in early June.

Bills of Importance to the PKD Community

  • Living Donor Protection Act (HR 1270/no Senate bill yet) would remove barriers to living organ donation. Rep. Jerrold Nadler (D-NY) and Rep. Jaime Herrera Beutler (R-WA) introduced the bill.
  • The OPEN Act (HR 1223/ no Senate bill yet) would make it easier for companies to repurpose approved drugs for treating rare diseases. Reps. Gus Bilirakis (R-FL), GK Butterfield (D-NC), and Mike McCaul (R-TX) introduced the bill.

Say Thanks to Supporters

Too often we forget to thank those representatives who support proposals of importance to the PKD community.  In addition to the bills’ sponsors, the following Members of Congress have cosponsored either the OPEN Act or the Living Donor Protection Act. If you are represented by any of these Members, please tell them “thank you” the next time that you contact them.

HR 1223, OPEN Act

  • Leonard Lance (R-NJ)
  • Rodney Frelinghuysen (R-NJ)
  • Darren Soto (D-FL)
  • Tim Murphy (R-PA)
  • Anna Eshoo (D-CA)
  • Daniel Donovan (R-NY)
  • Markwayne Mullin (R-OK)
  • Donald Norcross (D-NJ)
  • Jeff Fortenberry (R-NE)
  • Jared Huffman (D-CA)
  • Don Bacon (R-NE)
  • Daniel Webster (R-FL)

HR 1270, Living Donor Protection Act

  • Bill Posey (R-FL)
  • Eric Swalwell (D-CA)
  • Tim Ryan (D-OH)
  • Kevin Yoder (R-KS)
  • Tom O’Halleran (D-AZ)
  • Michelle Lujan Grisham (D-NM)
  • Matt Cartwright (D-PA)
  • David Cicilline (R-RI)
  • Mark Pocan (D-WI)
  • Carol Shea-Porter (D-NH)
  • David Young (R-IA)
  • Scott Peters (D-CA)
  • Lamar Smith (R-TX)
  • John Yarmuth (D-KY)
  • Peter Visclosky (D-IN)
  • Yvette Clarke (D-NY)
  • Brian Fitzpatrick (R-PA)
  • Suzan DelBene (D-WA)
  • Lisa Blunt Rochester (D-DE)
  • John Lewis (D-GA)
  • Ruben Gallego (D-AZ)
  • Mark DeSaulnier (D-CA)
  • Clay Higgins (R-LA)

Stay Alert

When the time comes, we will ask PKD advocates to immediately contact their elected officials to protect your interests.  Your voice needs to be heard.


Updated: May 22, 2017