Washington summary February 2017

Trump Administration

The impact on FDA and NIH of the Jan. 24 hiring freeze for federal employees, except for national security and public safety reasons, remains uncertain.   Reps. Fred Upton (R-MI) and Diana DeGette (D-CO), key figures behind the 21st Century Cures Act, believe the freeze would hurt FDA’s efforts to recruit personnel and would delay drug reviews and other operations.

Former Rep. Tom Price (R-GA) has been sworn in as the Secretary of HHS.  He will be involved actively in health care reform, and we now may see movement on nominations to run the NIH and FDA.

On Feb. 16, the Senate confirmed former Rep. Mick Mulvaney (R-SC) as the head of the Office of Management and Budget (OMB).

The 115th Congress

Developing a consensus for repealing/reforming the Affordable Care Act (ACA) is more complicated that some had thought. A simple majority in the House is required.  Because of Senate rules, some action may require 60 votes.

House Republicans had planned to release their ACA repeal bill on Feb. 16.

Congress watchers are more confident that the Republican plan to replace ACA will include these major elements:

  • Expanded Health Savings Accounts (HSA)
  • High-risk insurance pools
  • Medicaid reform
  • Tax credits to help buy insurance policies

The house is hoping to complete work on its first ACA bill in March.

The Hill, which covers Congress and politic, recently ran a story on the ten people to watch on ACA repeal/replacement:

  • Chairman Lamar Alexander (R-TN) of the Senate HELP Committee;
  • Rep. Mark Meadows (R-NC), who chairs the House Freedom Caucus;
  • Former Rep. Tom Price (R-GA), now the Secretary of HHS;
  • Sen. Dean Heller (R-NV);
  • Sen. Susan Collins (R-ME);
  • Sen. Bill Cassidy (R-LA), a physician;’
  • Chairman Greg Walden (R-OR) of the House Energy and Commerce Committee;
  • Sen. Rand Paul (R-KY);
  • Sen. Bob Corker (R-TN); and
  • Chairman Orrin Hatch (R-UT) of the Senate Finance Committee

We believe that ACA’s protection of patients with preexisting conditions (such as PKD) should not be repealed.  PKD advocates should contact their Representative and Senators with the request the Congress continue to guarantee access to affordable insurance coverage without a cap on benefits for Americans with preexisting medical problems.

We have a list of new Representatives and Senators and of those officials who serve on committees that deal with PKD-related issues.  That gives the information you need to introduce yourself to your new elected officials and to begin to educate them on PKD and our needs in 2017.

New Congress Means New Bills

The 115th Congress begins from square one on PKD-related subjects.  Here are some of the key issues for this year:

    • NIH funding:  Congress must act by April 28 to continue FY17 funding for NIH and a number of other departments and agencies.  We still hope to see an increase in health research funds for the rest of the current fiscal year.  Then Congress will decide how to fund NIH and FDA in FY18 (which begins on Oct. 1, 2017)
    • Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (HR 6139 in the previous Congress):  Dr. Michael Burgess (R-TX) and Rep. Ron Kind (D-WI) plan to reintroduce the bill that would continue necessary medication for kidney transplant recipients.
    • Living Donor Protection Act (previously HR 4616/S 2584) would remove barriers to living organ donation.
    • The OPEN Act (previously HR 971/S 1421) would make it easier for companies to repurpose approved drugs for treating rare diseases.

At this time, no action has occurred on these proposals.

Stay Alert

The White House and administration could release new policy proposals at any time.  The House of Representatives could consider vital legislation in a matter of days.

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:  Feb. 16, 2017, 2pm