Washington Summary November 2019

Fiscal Year 2020 (FY20) funding

On November 21, Congress passed and the President signed another continuing resolution (CR), the second one this year. The CR extends the FY19 funding levels through December 20, 2019 (the last one was set to expire on November 21). By the December date, the House and Senate will need to either pass the FY20 federal budget OR they will need to put another CR in place to allow more time to negotiate the bill. Failure to do one of these things will result in a government shutdown. Little has changed on this since last month, although Congressional leaders have said they want to pass individual appropriations bills, rather than more CR’s, by the end of the year. They are currently scheduled to leave Washington for the break on Dec. 13, although that date can be extended as necessary to pass the spending legislation.

The impact a shutdown will have on PKD includes:

  • NIDDK will not have access to FY20 budget and will not be able to start new programs or expand existing ones, and will not be able to award new research funding. On October 4th, the NIH released a notice titled “NIH Operates Under a Continuing Resolution” to describe practices and procedures for the NIH under a CR.
  • DOD/CDMRP will also not have access to FY20 budget and thus will not be able to award new research funding. PKD researchers will not be able to apply for FY20 funding under the PRMRP as until that legislation is signed into law, there is no guarantee it will remain in place.
  • While Congress can do many things at once, they will be heavily focused on passing the budget and thus it may be more difficult to gain attention to our other policy priorities.

Important info to know

On November 5th, the Trump Administration formally nominated 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. The next step will bring Dr. Hahn to the full Senate for consideration, likely to happen in December.

November brought tensions to the surface 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). While this may typically be unimportant drama to ignore, in this case it has the potential to cause delays in a variety of health policy measures, including the administration’s position on health insurance and how it views the Affordable Care Act. Only time will tell if this calms down or if a change must be made to keep the peace.

Congress and health insurance

Not much changed in November 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. See last month’s summary for more information on this proposal. A full House vote on this is planned for December. Check back next month for updates on this progress.

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

The PKD Foundation is joining with the greater kidney community to push for swift introduction and passage of the Immunosuppressive Coverage Act of 2019. As of the end of November, the community is waiting for Congress to introduce this legislation in both the House and Senate. Watch email for an advocacy alert if/when action needs to be taken, likely in December.

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.

New Cosponsors of H.R. 1224, the Living Donor Protection Act

  • Katie Porter (D-CA-15)
  • Cynthia Axne (D-IA-3)
  • Robin Kelly (D-IL-2)
  • David Scott (D-GA-13)
  • Carol Miller (R-WV-3)
  • Thomas Suzzoi (D-NY-3)
  • Nydia Velazquez (D-NY-7)
  • Andy Kim (D-NJ-3)
  • Diana DeGette (D-CO-1)
  • Bill Pascrell Jr. (D-NJ-9)
  • Michael Doyle (D-PA-18)
  • Antonio Delgado (D-NY-19)
  • Tom O’Halleran (D-AZ-1)


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

No new Senate cosponsors were added in November.

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: December 2, 2019