Washington Summary January 2020

Fiscal Year 2021 (FY21) funding

After the whirlwind of December 2019 to complete the FY20 federal spending bills, there’s no time to waste before starting on the FY21 (Oct. 1, 2020 – Sept. 30, 2021) budget. The PKD Foundation’s budget priorities are as follows:

  • DOD/CDMRP/PRMRP: Our top priority again is to secure PKD a place on the peer-reviewed medical research program topic list. We will also advocate for the budget for this program to expand beyond the $3.6 million of FY20. Finally, we will continue the effort to secure a PKD line item to create a PKD research program (PKDRP). If successful, this will ensure PKD researchers have their own funding each year, instead of having to compete for dollars from the larger peer-reviewed program. Be on the lookout for an Advocacy Alert asking for your help to secure signatures for our FY21 Dear Colleague Letter!
  • NIH/NIDDK: We will work with the larger medical research community to ask for an increase over the FY20 number. The increase will be similar to the current year, making the total ask around $44 billion. In similar fashion, we will likely target a modest increase for the NIDDK as well, although the exact number is not known yet.


Important info to know

We will continue to monitor activities from the administration, HHS, and CMS to see how the July 2019 Executive Order continues to take shape. Check out the PKD Foundation blog and especially a series of four blogs in January for the latest on this topic.


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:

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

This month, President Trump called HHS Secretary Alex Azar to vent that progress over drug pricing has not moved fast enough, and grilled him over the administration’s new Canadian drug importation plan. There is speculation that this conversation could result in renewed effort to move forward some version of a drug pricing bill tying our prices to those in other countries, despite fierce opposition by many in the President’s party.

In October 2019, 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 Dec. 12 and was referred to the Senate on Dec. 16, 2019. It now awaits action in the Senate.

On Sept. 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 Dec. 23, 2019! It was then referred to both the Energy and Commerce and Ways and Means Committees. On Jan. 8, 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!

On Jan. 7, 2019 the PKD Foundation joined with over 40 other organizations to send a letter to every member of the House of Representatives urging them to support this legislation. We will do the same for the Senate when the bill is introduced in that chamber.


PKD Awareness Day Resolution

Sens. Roy Blunt (R-MO) and Ben Cardin (D-MD) introduced and passed S.Res.356, a resolution to recognize Sept. 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 H.R.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 January 2020.

There were no new Cosponsors of S.511 in January 2020.


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:  Jan. 31, 2020