Washington summary June 2017

Health Care Reform

On May 24, the Congressional Budget Office (CBO) advised Congress that the U.S. House of Representatives’ health care reform bill (H.R. 1628) would increase the number of uninsured Americans by 23 million.

The Senate continues to work on its own health care reform proposal. One option would prevent states from charging people with pre-existing conditions more for insurance, but it would allow states to waive certain essential benefits.

A Senate vote could occur in late June or early July. PKD advocates: Watch your inbox for more information as the health care reform progresses in the Senate.

FY18 NIH Funding

On May 23, the Trump administration released its full FY18 budget document. That document requests $1.449 billion for National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) for the fiscal year beginning on Oct. 1, 2017. This compares to $1.814 in FY16, the last full year of funding for kidney and related disease research.

The total FY18 request for National Institutes of Health (NIH) fails to consider the additional $2 billion that Congress gave NIH in the final FY17 appropriations act (Public Law 115-31). Many in Congress already have indicated that the NIH request is too low.


On May 11, the Senate HELP Committee approved the FDA Reauthorization Act (S 934) by a vote of 21to 2. The bill reauthorizes the user fee system for prescription drugs (PDUFA), medical devices and biosimilars for five years. 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 June 7, the House Energy and Commerce Committee approved its version of the FDA/PDUFA bill (H.R. 2430) by a vote of 54 to 0.

Bills of Importance to the PKD Community

  • Living Donor Protection Act (H.R. 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 (H.R. 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. The following members of Congress have cosponsored either the OPEN Act or the Living Donor Protection Act. If any of these members represent you, please tell them “thank you” the next time that you contact them.

H.R. 1223, OPEN Act

  • Steve Palazzo (R-MS)
  • Francis Rooney (R-FL)

H.R. 1270, Living Donor Protection Act

  • Earl Blumenauer (D-OR)
  • Steve Knight (R-CA)
  • Chellie Pingree (D-ME)
  • Jim Himes (D-CT)
  • Keith Rothfus (R-PA)
  • Peter DeFazio (D-OR)
  • Adam Schiff (D-CA)
  • Ileana Ros-Lehtinen (R-FL)

New Members of Congress

Two special elections have occurred in the past month, and two new representatives have taken their seats in the House: Rep. Greg Gianforte (R-MT-At Large) and Rep. Jimmy Gomez (D-CA-34).  If you are a constituent of either member, now is a good time to introduce yourself and discuss PKD issues with him.