Washington Summary December 2019

Fiscal Year 2020 (FY20) funding

On December 20, President Trump signed into law a spending bill that includes funding for a number of programs important to the PKD Community. These programs include:

  • DOD/CDMRP/PRMRP: PKD was again included as a topic area to compete for funding in the Peer Reviewed Medical Research Program. While PKD does not have a specific amount of funding allocated to it, the overall PRMRP program saw an increase of $10 million, with a total funding line item of $3.6 million. Our researchers will now be able to apply for a portion of this money in 2020.
  • NIH/NIDDK: The NIH received a $41.7 billion allocation, which is $2.6 billion more than they received in the previous year (a 6.65% increase!). The NIDDK received $2.1 billion, a small increase over the previous year.
  • KidneyX: This public-private partnership between the American Society of Nephrology (ASN) and the Department of Health and Human Services (HHS) was given $5 million to continue the prize award program for the kidney treatment innovation program.
  • NLDAC: The National Living Donor Assistance Center was given $4.5 million dollars to continue and expand its financial assistance support of living donors.

Important info to know

On December 12th, the Senate confirmed Dr. Stephen Hahn to be the next commissioner of the US Food and Drug Administration. On November 20th, he appeared before the Senate Health, Education, Labor and Pension Committee (HELP) and answered a wide range of questions.

November tensions between the nation’s top health officials, Alex Azar (Secretary of Health and Human Services, or HHS) and Seema Verma (Administrator of the Centers for Medicare and Medicaid Services, or CMS) seem to be calming down. Reaching a fever pitch in November and early December, this feud had the potential to derail a number of the President’s healthcare and prescription drug priorities. On December 12th, both officials were called to the White House to meet with Vice President Mike Pence and White House Chief of Staff Mick Mulvaney. Their message was clear: knock it off or someone must go. Azar and Verma seem to have received the message, as reports of public squabbling have certainly dropped off. Let’s hope this returns things to business as usual and the effort to improve health care and lower drug prices can begin again without distraction.

Congress and health insurance

Not much has changed over the past few months in this area. It will be a major issue in the 2020 Presidential race, Senate and House seats up for reelection next year and on down the ballot.

The phrase “Medicare for All” continues to receive a lot of attention in the media.  That is a simplified phrase that covers a broad range of legislative proposals to increase access to health insurance.  Some would create a single-payer national program; others would expand Medicare or Medicaid.  Some bills would eliminate private insurance (even policies provided now by employers; others would retain some private plans).  The devil is in the details.

Here are some of the major bills:

  • HR 1384, Medicare for All
  • S 470 and HR 1346, Medicare at 50
  • S 489 and HR 1277, buy-in option for Medicaid
  • S 981, Medicare X, allowing anybody to buy into Medicare
  • S 1129, Medicare for All
  • HR 1884, Protecting Pre-Existing Conditions & Making Health Care More Affordable
  • S 1125, the Protect Act
  • HR 2452, Medicare for America Act
  • S 1261, Choose Medicare Act

Nobody expects the Senate to consider any major health insurance measure that the House may pass. Health and political analysts believe that these proposals are laying the groundwork for the 2020 campaign and the next Congress in 2021.

Some information may be found in a previous Monthly Summary. For specific information on the provisions in any of the bills mentioned above, go to congress.gov or to the sponsor’s official website at house.gov or senate.gov.

Health insurance: Affordable Care Act (ACA), essential health benefits, preexisting conditions and more

PKD patients and their families need to continue to monitor state and administration activities to change ACA’s guaranteed access to affordable health insurance for persons with preexisting conditions such as PKD.

The administration is working on a health insurance plan that President Trump is expected to announce in September.  According to one report, the administration is considering expanding health savings accounts and allowing the sale of health insurance across state lines.

Drug prices

Many PKD patients need prescription drugs to treat PKD and/or deal with symptoms associated with their disease.  Medicare, group insurance through employment, or private insurance plans may cover a portion of the high cost of some of these drugs.

In October, the House Energy and Commerce Committee (E&C) advanced H.R. 3, the Lower Drug Costs Now Act, Speaker Nancy Pelosi’s drug pricing proposal. This bill passed the House, 230-192 on December 12th and was referred to the Senate on December 16th. It now awaits action in the Senate.

On September 25, Senate Finance Committee Chairman Charles Grassley (R-IA) and ranking member Sen. Ron Wyden (D-OR) released their drug pricing bill: S.‍2543, the Prescription Drug Pricing Reduction Act.  No additional action was taken on this bill in October or November. See September’s summary for additional information.

Surprise medical bills

In response to the July bill approved by the House Energy & Commerce Committee, the House Ways & Means Committee is drafting its own bill to protect patients from surprise medical bills.  The main contentious issue is how to resolve payment disputes between health insurance companies and providers (hospitals, physicians, etc.) and how to deal with air ambulance bills. No further progress on this has been made to date, although much discussion has continued to take place.

Bills of importance to the PKD community

Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019, H.R.5534

The PKD Foundation is pleased to announce that this legislation was introduced in the House by Rep. Ron Kind December 23rd, 2019! It was then referred to both the Energy and Commerce and Ways and Means Committees. On January 8th, 2020, the E&C discussed the bill in a hearing — the first hearing for this legislation since at least 2013. As we await a vote in the full House, the PKD Foundation is joining with the greater kidney community to push for swift passage. Please make your voice heard by calling and emailing your legislator today!

Current cosponsors of the Immuno bill:

  • Michael Burgess, TX
  • Anna Eshoo, CA
  • Jason Smith, MO
  • Donald McEachin, VA
  • Jamie Herrera Beutler, WA
  • Bobby Rush, IL
  • Brian Fitzpatrick, PA

PKD Awareness Day Resolution

Sens. Roy Blunt (R-MO) and Ben Cardin (D-MD) introduced and passed S. Res. 356, a resolution to recognize September 4 as “National Polycystic Kidney Disease Recognition Day”.  If you reside in Missouri or Maryland, please let these offices know how much you appreciate their support!

Living Donor Protection Act of 2019

The Living Donor Protection Act, which would remove barriers to living organ donation, was introduced in both the House and Senate.  Reps. Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA) introduced HR 1224.  Sens. Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR) introduced S. 511.  PKD advocates may want to urge past supporters to again cosponsor this legislation.

There were no new Cosponsors of H.R. 1224 in December, 2019.

New Cosponsors of S. 511, the Living Donor Protection Act:

  • Gary Peters, MO
  • Pat Toomey, PA
  • Robert Casey, PA
  • 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: January 10, 2020