Washington Summary October 2017

Health Care

On Sept. 26, Senate Majority Leader Mitch McConnell (R-KY) indicated that the Senate would not vote on the most recent attempt to amend the Affordable Care Act (ACA).  Sens. Lamar Alexander (R-TN) and Patty Murray (D-WA) may seek to revive their HELP Committee efforts to stabilize the individual insurance market.

Sen. Lindsey Graham (R-SC) indicated that he plans to go around the country in an attempt to get support for the proposal that he wrote with Sen. Bill Cassidy (R-LA). Whether the Senate again will consider ACA reform remains to be seen.

On Oct. 12, President Trump signed an executive order directing federal departments to make it easier to:

  • expand access by small businesses to association health plans (AHP)
  • expand the availability of short-term health insurance policies.

According to most healthcare experts, neither proposal would help people with preexisting conditions. They eventually may decrease the availability and increase the cost of their current ACA health insurance policies. It will take several months for these proposals to be implemented.

The administration also ended cost-sharing reduction (CSR) payments designed to make ACA insurance premiums more affordable for low- and middle-income people. The Congressional Budget Office (CBO) earlier noted that the end of these payments would increase the number of uninsured people who would not be able to afford non-subsidized insurance policies. Congress could provide funds for CSR in a future appropriations bill.

FY18 NIH Funding

In September, the House passed H.R. 3354, the Make America Secure and Prosperous Appropriations Act. This is 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).

The Senate has not passed its own Labor/HHS bill, but the Senate Appropriations Committee approved a proposal to increase NIH funding by $2 billion in FY18.

Now is the time for advocates to contact Congress with a simple message: accept the $2 billion Senate increase for NIH in FY18.

Tax Reform

On Sept. 27, administration and Republican lawmakers released a blueprint that will guide Congress in its efforts to draft a tax relief bill. For more information, please go to the website of the House Ways and Means Committee at house.gov.

Tax reform could impact health care in a number of ways.  For example, Congress could limit or eliminate the medical tax deduction. Also, a tax bill might eliminate or change ACA’s tax benefits for individual insurance purchasers. More information will be provided when it becomes available in the next few weeks.


In September, the Senate passed S. 860, the Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act of 2017. The bill expands Medicare coverage for telemedicine. Among its provisions, S. 860 would allow home dialysis facilities to count as an originating site for telehealth visits. The House passed a related bill (H.R. 3178) in July.

New Senate kidney bill

On Sept. 28, Sens. Ben Cardin (D-MD), Roy Blunt (R-MO), and Bill Nelson (D-FL) introduced S. 1890, the Chronic Kidney Disease Improvement in Research and Treatment Act of 2017. Among its provisions, the bill would identify issues that prevent kidney transplants, promote access to home dialysis, and guarantee Medigap coverage for all ESRD Medicare-eligible patients.

This bill is comparable to H.R. 2644, introduced earlier this year by Reps. Tom Marino (R-PA), John Lewis (D-GA), and Peter Roskam (R-IL).

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. PKD and several other patient groups have signed a letter urging House Members to cosponsor H.R. 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 update. If any of them represent you, please say thank you the next time that you contact them.

HR 1223, OPEN Act

  • Rep. William Lacy Clay (D-MO)

HR 1270, Living Donor Protection Act

  • Rep. Dwight Evans (D-PA)
  • Rep. Dave Loebsack (D-IA)
  • Rep. Bonnie Watson Coleman (D-NJ)
  • Rep. Steve Palazzo (R-MS)
  • Rep. Peter King (R-NY)

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.

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