Washington Summary July 2017

Health Care Reform

The Senate will not take up its most recent version of a bill (the BCRA) to replace the Affordable Care Act (ACA or Obamacare).  Senate Majority Leader Mitch McConnell (R-KY) has asked the Senate to vote on a proposal to repeal the ACA immediately and provide a two-year transition period. This request has failed to gain the required support [as of 4 pm ET 07/18/17].

PKD advocates cannot ease up on their efforts to advise their elected representatives in the House and Senate of their views on health insurance for people with preexisting conditions. The message is simple:

We urge Congress to keep without interruption guaranteed access to affordable health insurance that covers essential health benefits for people with PKD and other preexisting conditions.

The current ACA is not perfect. However, it is better than what PKD patients had in the past, when insurance companies either denied health coverage because of health status, imposed annual or lifetime caps on benefits, or priced insurance beyond the ability of patients to afford it.

Congress can repair what is broken; it must not repeal what is working for millions of Americans with preexisting conditions.

We encourage PKD advocates to continue to advise their elected officials of the importance of this issue to themselves, their families, and their communities.

Both the Senate and the House will be in district in August, which is a great time to schedule a visit. Target the visit to occur between August 14 and September 1; this is when they are most likely to be available and able to see constituents.

Say Thanks to Supporters

In late June, Sens. Orrin Hatch (R-UT) and Robert Menendez (D-NJ) introduced S 1509, the Senate version of the OPEN Act. If you live in their states, please thank them. If you live elsewhere, ask your two senators to cosponsor this bill.

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 since the previous newsletter. If any of these Members represent you, please tell them “thank you” the next time that you contact them.

HR 1223, OPEN Act

Rep. Cathy McMorris Rogers (R-WA)
Rep. Albio Sires (D-NJ)
Rep. Eric Swalwell (D-CA)
Rep. Fred Upton (R-MI)
Rep. Pete Olson (R-TX)

HR 1270, Living Donor Protection Act

Rep. Steve Cohen (D-TN)
Rep.Jacky Rosen (D-NV)


FY18 NIH Funding

On July 13, the House Labor/HHS Appropriations Subcommittee approved its bill to fund health programs in FY18. The Subcommittee agreed to provide HHS with $157.9 billion, a reduction of about two percent (or $3 billion) from the current level. For NIH, the Subcommittee provides $35.2 billion, which is $8.6 billion above the Trump budget request and $1.1 billion above current spending. The bill effectively rejects the budget proposal about capping administrative costs incurred by grant recipients.


On June 12, the House of Representatives by a voice vote passed HR 2430, the FDA reauthorization bill, which included the extension of the prescription drug user fee program for five more years. The bill continues the drug development process by modernizing the clinical trial process and retaining staff that assists in the development and review of rare disease medicines.

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/ S 1509] 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 HR 1223. Sens. Orrin Hatch (R-UT) and Robert Menendez (D-NJ) introduced S 1509.

New Members of Congress

Two new Members were elected to the House on June 20: Rep. Ralph Norman (R-SC-05) and Rep. Karen Handel (R-GA-06). If you are a constituent of either Member, now is a good time to introduce yourself and discuss PKD issues with him or her.

Sign Up for Alerts

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: July 19, 2017, 1:30 ET