Washington summary April 2017


Both the House and Senate are home until April 24.

Trump Administration

On April 5, the Senate HELP Committee held its hearing on the nomination of Dr. Scott Gottlieb to head the FDA.  If confirmed by the Senate, Dr. Gottlieb will implement the 21st Century Cures Act and play a role in the PDUFA VI authorization.   The HELP Committee is expected to approve the nomination during the week of April 24.  Then the Senate will vote on Dr. Gottlieb.

Dr. Francis Collins remains at the NIH at the time of this writing.

Health Care Reform

The House did not vote on the American Health Care Act in March.   Reports continue to appear that Speaker Paul Ryan is trying to reach a consensus on the bill within the House Republican Conference.  To gain support from the House Freedom Caucus, Republicans are seeking to give states the option of continuing the requirement for the coverage of essential health services.  More importantly, states would be able to choose to end community rating, which requires people of the same age to be charged the same amount for insurance.  Ending community rating would end for all intents and purposes ACA’s protection for people with preexisting conditions.  If a state ended community rating, then insurance companies could make insurance unaffordable for people with PKD and other conditions.

FY17 and FY18 Appropriations

Funding for NIH and FDA expires on April 28.  The PKD Foundation and other interested organizations hoped for an increase in NIH funding in the current fiscal year.  But, the administration has proposed a $1.2 billion reduction in NIH funding for the remaining five months of the fiscal year.  We have urged the Appropriations Committees to reject this unjustified proposal.

Unless Congress agrees on a new continuing resolution (CR) to cover the rest of FY17, all government agencies—except for the Veterans Administration (VA)—will shut down on April 29.

In March, the administration released its FY18 budget proposal.  The budget request would reduce total HHS funding to $69 billion, nearly 18 percent lower than the current year.  The administration requests $25.9 billion for NIH, a reduction of $5.8 billion from current levels.  In addition, the administration proposes to reorganize the 27 institutes and centers within NIH.  Finally, the budget calls for changing FDA user fees to add $1 billion to FDA’s budget and for improving FDA efficiency.  Congress may take up these changes during its consideration of PDUFA VI legislation in the next few months.

In response to a request for public input, the PKD Foundation asked the House Appropriations Committee for an increase in funding in FY18 for NIDDK in general and for PKD research in particular.  A similar request was sent to the Senate Appropriations Committee.

New Bills

The House has taken no further action on several bills that the PKD Foundation has supported:

  • 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/ no Senate bill yet) 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 the bill.

Genetic Testing

On March 8, the House Education and the Workforce Committee approved HR 1313, the Preserving Employee Wellness Programs Act.  The bill’s supporters say that it would help employers who offer wellness programs at work.  Opponents claim that employees who do not provide genetic information on themselves or their families could see their insurance premiums increased by up to 50 percent.

Two other committees need to consider HR 1313 before the House can debate the bill.  We continue to monitor the situation and will advise you of future developments.

Town Halls

Town halls are taking place all over the country. This is your opportunity to be heard! Find a local town hall today at townhallproject.com.

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:  April 18, 2017