Washington Summary August 2017

Health Care Reform

In the early morning of July 28, the Senate failed to approve any changes to the Affordable Care Act (ACA or Obamacare). Majority Leader Mitch McConnell (R-KY) pulled the ACA repeal/replace bill from the legislative calendar for now.

During its debate, the Senate rejected the following proposals:

  • A comprehensive Better Care Reconciliation Act (BCRA) that included the Cruz amendment that would have allowed states to retain ACA policy but also allow plans without essential health benefits (EHB). The amendment also included $100 billion to help pay out-of-pocket medical costs for low-income people, including those who buy private insurance after losing Medicaid coverage,
  • The repeal of most of ACA in two years, which would have given Congress time to draft a replacement law.
  • “Medicare for all” or a single-payer health insurance program.
  • The so-called “skinny repeal” of the requirements for individuals to buy health insurance and employers to provide coverage for their workers.

Groups in both the House and Senate continue to craft legislative proposals to change the present law. They are focusing on the individual market (reinsurance or cost-sharing reductions), Medicaid, and drug prices (a key Democratic issue).

For example, a bipartisan House proposal would change the mandate for small business coverage from 50 to 500 employees. It also would create a state stability fund to help people with preexisting conditions.

Sens. Lindsey Graham (R-SC) and Bill Cassidy (R-LA) have a bill to provide more money to the states. House Republicans are seeking support for a proposal to better fund the cost-sharing reduction program.

In early September, the Senate HELP and Finance Committees will hold a hearing on how to strengthen the individual insurance market and other health issues.

Health insurance experts have stated that some action to protect the private market needs to be taken before the next open season begins in the fall.

On August 15, the Congressional Budget Office (CBO) released an analysis on the impact of ending ACA’s cost-sharing reduction payments to insurance companies.  Those payments now keep down the cost of individual insurance policies for lower-income individuals. CBO estimates that ACA policy premiums will increase by 20 percent in 2018 if the $7 billion in annual premiums are ended. In addition, the deficit would increase by $194 billion over the next 10 years without the payments. The administration has threatened to end these payments, but no final decision yet has been made.

FY18 NIH Funding

On July 19, the House Appropriations Committee approved its bill to fund health programs in FY18. The Committee agreed to provide HHS with $157.9 billion, a reduction of about two percent (or $3 billion) from the current level. For NIH, however, the Committee provided an additional $1.1 billion, rather than accepting the nearly $6 billion reduction in the Trump budget.

The Senate Appropriations Committee has not yet considered its version of the bill.

FDA Reform and User Fees (PDUFA)

On August 3, the Senate passed HR 2430, which makes certain improvements to the FDA and extends for five years the prescription drug user fee program. The fees fund the approval and regulatory programs for new drugs and devices. The House already had passed the bill. The administration wanted Congress to double the user fees.

In separate action, the Senate approved S 204, the Trickett Wendler Right to Try Act.  Authored by Sen. Ron Johnson (R-WI), the bill would allow terminally ill patients to access experimental drugs that have not yet received FDA approval. The House has not considered comparable legislation.

ESRD and Dialysis

On July 25, the House by voice vote passed HR 3178, Medicare Part B Improvement Act of 2017. One section will allow virtual visits and remote patient monitoring for kidney failure patients living at home. Patients would be able to use telehealth to access needed services in their homes. The Senate now will consider this proposal.

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.


Rep. Billy Long (R-MO)

HR 1270, Living Donor Protection Act

Rep. Dan Lipinski (D-IL)

S 1509, OPEN ACT

Sen. Tim Scott (R-SC)
Sen. Bill Nelson (D-FL)

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: August 14, 2017