Washington Summary September 2017

Big Budget Picture

Congress has a busy fall schedule. The major proposals include approving spending for FY18, ensuring that federal debts are paid, dealing with immigration, and reducing certain taxes. Congress also may try to change or improve certain parts of the Affordable Care Act (ACA or Obamacare).

Health Care

The Senate HELP Committee conducted four hearings in September on health care. Chairman Lamar Alexander (R-TN) and ranking Democrat Patty Murray (D-WA) want to find a way to stabilize the individual insurance market. Several contentious issues need to be resolved, including giving states more flexibility in providing coverage and continuing payments to keep the cost of premiums reasonable.

At the time of this writing, Senators Bill Cassidy (R-LA) and Lindsey Graham (R-SC) continue to seek support for their bill to give states more flexibility to stabilize the individual health insurance marketplace. If they are able to get 50 Senators to endorse the bill, the Senate could vote on it before the end of September.

The sponsors state that their proposal would repeal the individual and employer mandate on the purchasing of health insurance, make it easier for states to obtain waivers of current ACA regulations, and protect patients with preexisting conditions. The impact of easier state waivers on current essential health benefits or the actual cost of individual insurance is uncertain.

FY18 NIH Funding

On September 7, the Senate Appropriations Committee approved its Labor/HHS/Education Appropriations bill. The Committee increases funding for NIH to $36.1 billion for FY18—a $2.0 billion increase over FY17 funding levels.

On September 14, the House passed HR 3354, the Make America Secure and Prosperous Appropriations Act, an eight-part bill that includes the FY18 Labor/HHS/Education Appropriations bill. The House bill increases funds for NIH by $1.1 billion over the FY17 funding level and includes $1.9 billion for NIDDK programs (an increase of $29.1 million from FY17).

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. PKD and several other patient groups have signed a letter urging House Members to cosponsor HR 1270.
  • 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.

Say Thanks to Supporters

Too often we forget to thank those elected officials who support proposals of importance to the PKD community. The following Senators and Members of Congress have cosponsored either the OPEN Act or the Living Donor Protection Act since the previous newsletter. If any of them represent you, please say “thank you” the next time that you contact them.

HR 1223, OPEN Act

Rep. Carol Shea-Porter (D-NH)

Rep. Mo Brooks (R-AL)

Rep. Steve Stivers (R-OH)

HR 1270, Living Donor Protection Act

Rep. Stephen Lynch (D-MA)

Rep. Dianna DeGette (D-CO)

Rep. Tom Marino (R-PA)

Rep. Dan Kildee (D-MI)

Rep. Bobby Rush (D-IL)

S 1509, OPEN Act

No new cosponsors

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:  September 17, 2017