2019 in review and what’s ahead in 2020

Published November 21, 2019
Written by Alexis Denny, Director of Government Affairs

Time flies, and I can’t believe we’re already looking at a year-end recap. Advocacy for PKD Foundation is a huge undertaking and I’m so grateful for our partners, researchers, patients, and lawmakers who champion our goal to find a cure for PKD.

Advocates championing PKD

In 2019, PKDF chose a dual approach for its advocacy goals regarding Department of Defense funding.

  1. Maintain PKD on the list for the Peer Reviewed Medical Research Program (PRMRP)
  2. Work to secure a special line-item of funding that would be dedicated only to PKD, so our researchers don’t have to compete with other disease areas for funding.

This year, PKD successfully maintained its status on the PRMRP list for FY20 (Oct. 1, 2019 – Sept. 30, 2020). This win ensured PKD researchers are able to compete for a share of the $350 million available in this program. We’ve also continued to build our champions on the Hill and gain new supporters!

  • Congresswoman Debbie Wasserman Schultz (D-FL) circulated a Dear Colleague letter this spring to gain support for PKD’s line item.
  • Senators Jerry Moran (R-KS), Tammy Baldwin (D-WI), and Ben Cardin (D-MD) requested the inclusion of PKD in the PRMRP list with a $10 million-line item.

Steps toward success

Other wins during the year included PKDF reaffirming its partnership with National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK). NIDDK is part of the National Institutes of Health (NIH), a division of the Department of Health and Human Services. The organization conducts and supports research on many of the most common, costly, and chronic conditions to improve health.

PKDF, along with the larger kidney advocacy community, asked for $2.165 billion in the FY20 budget for the NIDDK to benefit patients dealing with kidney-related issues, a 6.7% increase from the FY19 budget. We also asked Congress to provide $41.6 billion to the NIH for Fiscal Year 2020, a $2.5 billion increase of the Fiscal Year 2019 budget

PKDF worked with the larger kidney advocacy community on several important initiatives:

  • The Advancing American Kidney Health Executive Order (EO) in July was an exciting day for kidney patients in the U.S. With the backing of the administration and massive support from HHS Secretary Alex Azar and his team, this EO brought much-needed attention to the issues impacting chronic kidney disease patients. From improving patient-choice surrounding dialysis options to promising to double the number of kidneys available for transplant by 2030, we are all energized by the focus and momentum this exciting day brought.
  • R. 1224/S. 511 — Living Donor Protection Act was introduced in February and we are working hard to get it passed into law as soon as possible.
  • Comprehensive Immunosuppressive Coverage Extension for Kidney Transplant Patients Act — While not yet introduced, much work has been done behind the scenes to make progress on this. We are hopeful to introduce and pass this bill before the end of the year or in early 2020.

In with the new

Looking back, 2019 has been a busy and successful year. As we welcome the new year, PKDF looks toward renewing our commitment to PKD advocacy in 2020. We will do this by continuing our efforts to make PKD research funding available through the DOD/PRMR Program, advocating for more PKD research funding by the NIDDK, and always looking out for new ways to support and advocate for our patients as well as our researchers in their efforts to find treatments and a cure for PKD. Don’t miss your opportunity to join the fight!

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