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Sensing Savvy

Kidney Patient Advocates Make Strides

Posted by Susan Eymann, MS on Jun 11, 2018

One in seven American adults, or 30 million people, are now estimated to have chronic kidney disease (CKD). Many people, however, don’t know they have it. patient-advocates

The National Kidney Foundation (NKF) has a patient advocacy and engagement program that helps educate individuals on kidney disease. Its Kidney Advocacy Committee (KAC) is a group of nearly 200 patient liaisons who use their personal experience to champion the NKF's priorities and encourage action.

Recently, the group has had several wins. In March, about 100 patients and family members from 41 states, and five organizations, met with 145 legislators’ offices at the 5th Annual Kidney Patient Summit—an event hosted by the National Kidney Foundation in Washington, D.C. The group advocated for:

  • Improved early detection and treatment of chronic kidney disease (CKD)
  • Increased funding for federal CKD research, awareness and assistance programs
  • The Living Donor Protection Act (H.R. 1270) to protect living kidney donors

Patient advocates claimed victory when Congress passed agency funding legislation for FY2018 on March 21. Funding was increased to support research and programs that generate awareness and promote improved access to treatment for CKD.

Accomplishments are also being made on the state level. Patient advocates are working with their governors and state legislators to improve awareness of CKD by issuing proclamations to celebrate kidney patients and living kidney donors.

For more information about patient advocacy for chronic kidney disease, visit the National Kidney Foundation website.

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