I’m excited to dig into the PKD Foundation’s 2019 legislative plan with the 116th Congress, sworn in this January. A historically young and energized group, many of them truly care about issues that are important to the PKD community. I will be working to leverage their momentum to focus on a number of top legislative priorities for the year. Read on to learn about a few of these priorities:
PKD research funding
- PKD was added to the topic area list for the fiscal year 2019 (FY19) Peer Reviewed Medical Research Program (PRMRP), a Department of Defense (DOD) medical research funding program. We will work to ensure that PKD is also on the list for FY20.
- This year, we will also work with House members to secure additional, focused funding for PKD research through the Congressionally Directed Medical Research Programs (CDMRP).
- Keep an eye out for an advocacy alert on this soon. If you are not already, sign up to receive our advocacy alert emails. Your voice must be heard!
- The above critical work will require champions in both the Senate and the House. If you have a close connection or personal relationship with any members of Congress or their staff, please reach out to firstname.lastname@example.org–we need your help!
- We’re calling for $2.165 billion in the budget in FY20 for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), a 6.7% increase over the FY19 budget.
- We’re also calling for $41.6 billion for the National Institutes of Health (NIH) overall, a 6.4% increase of FY19’s budget.
Health Care and Insurance
There has been so much in the news lately about Medicare for All, Affordable Care Act reform and preserving or eliminating protections for people with preexisting conditions, it’s hard to keep track. The PKD Foundation is monitoring situations regarding health insurance closely and is making sure the needs and experiences of PKD patients are known in Washington, D.C.
Stay tuned as this debate continues and know that the Foundation is focused on what is best for you. The PKD Foundation is nonpartisan and has friends on both sides of the aisle who want to make sure you have timely and affordable access to the care and medication you need to live the healthiest life possible!
The Year Ahead
2019 is already shaping up to be a busy year, with engagement happening both in D.C. and in state and district offices. I will be keeping you updated every step of the way, and will look to all of you to raise your voice at critical times throughout the year. Together we will work to raise awareness, secure funding for research and fight for a brighter, healthier future for everyone impacted by PKD.
To keep up to date with the latest news from the Hill, sign up for advocacy alerts today!