Advocating for Kidney Patients in Salem

This past week, the Northwest Kidney Council had the privilege of joining our partners at NW Kidney Kids, ALS Northwest, and other patient-focused organizations at the Oregon State Capitol to push for the passage of HB 2457.

This bill, which has been years in the making, would establish a Rare Disease Advisory Council — a much-needed step toward improving care, representation, and policy solutions for Oregonians living with rare diseases (dozens, if not hundreds, of which impact kidney function).

Meeting with lawmakers on both sides of the aisle, our group shared powerful stories of how rare diseases impact patients, families, and the healthcare system. Many legislators were receptive to our message, acknowledging that Oregon lags behind 29 other states in addressing the unique challenges rare disease patients face. By creating an advisory council, HB 2457 would ensure that patients, providers, and researchers have a direct voice in shaping state policies that affect their access to care and treatment.

Diseases such as atypical hemolytic uremic syndrome (aHUS), polycystic kidney disease, and alport syndrome can lead to kidney failure and the need for dialysis or transplants. These patients often struggle to get timely diagnoses, access to specialists, and insurance coverage for life-saving treatments. Establishing this council would help bridge these gaps by bringing together experts and patients to advise on policy solutions.

The Northwest Kidney Council is proud to support this effort, and we appreciate the leadership of our partners and Rep. Hai Pham in moving this legislation forward. If you’re curious about our other priorities in Oregon this year, check out our website or reach out to nathaniel@nwkidneycouncil.org any time.