AKF and IgA Nephropathy Foundation Push for Rare Kidney Disease Legislation on Capitol Hill
Event summary
- American Kidney Fund (AKF) and IgA Nephropathy Foundation advocate for rare kidney disease legislation with 80+ patient advocates on Capitol Hill.
- Legislation includes the New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518), Access to Genetic Counselor Services Act (H.R. 6280/S. 3607), and Living Donor Protection Act (H.R. 4582/4583/S. 1552).
- AKF’s Rare Kidney Disease Action Network (RKDAN) includes members with rare kidney diseases like PKD, IgAN, Alport syndrome, and FSGS.
- Advocacy day sponsored by pharmaceutical companies including Travere Therapeutics, Amgen, Otsuka, and Vertex.
The big picture
The push for rare kidney disease legislation aligns with broader trends in healthcare advocacy, where patient-led organizations are increasingly influencing policy. The involvement of major pharmaceutical companies underscores the strategic importance of rare disease research and access to care. Success in passing these bills could set a precedent for other rare disease communities seeking legislative support.
What we're watching
- Legislative Momentum
- Whether the New Era of Preventing End-Stage Kidney Disease Act gains traction in Congress, given its focus on rare disease research and early diagnosis.
- Industry Collaboration
- How pharmaceutical sponsors like Travere Therapeutics and Vertex Pharmaceuticals leverage this advocacy to support their rare disease pipelines.
- Patient Advocacy Impact
- The effectiveness of AKF’s Rare Kidney Disease Action Network in influencing policy changes for rare kidney disease patients.