How Your Story Helps Move Our Kidney Agenda Forward

By Tracy McKibben, Chair, NKF Board of Directors

As many of you know, I donated a kidney to my mother because she had kidney failure. My mother gave so much to me and my family that it was an easy decision to “give back.” It was such a gratifying experience that it prompted me to get more involved with the NKF, where I’m now Chair of the Board. By contributing my time, expertise, and, yes, financial resources, I found an even bigger way to “give back” to this important cause.

But I recently had the opportunity to give back on a very large scale – and it didn’t require anything as big as giving a kidney or writing a check. In fact, it’s something that anyone affected by kidney disease can do. All I had to do was tell my story.

Putting a Face to Kidney Policy

The NKF Board of Directors recently spent the day in Washington, D.C., urging federal lawmakers to support legislation that would:

• Increase access to home dialysis 
• Remove barriers to living donation 
• Increase federal investment in CKD research and prevention activities

While I thought I might have to become a quick expert on the Medicare program or reimbursement policy, what I learned was that a personal, heartfelt story can make an even bigger impression with lawmakers than statistics, reports, or legal arguments.

By sharing my story with elected officials, I was able to communicate the urgency, importance, and value of NKF’s policy agenda in very simple, human terms. As a living donor, I could share the worry that many prospective living donors face about losing insurance coverage, or worse, their jobs. I could share my mother’s experience with dialysis – how much effort went into getting her to and from treatments and how physically taxing it was – to illustrate why we needed to expand access to home dialysis. And I could share how transformative her transplant was – how it gave not only years to her life, but life to her years – and why we needed to transform the transplant system to better serve patients.

Learn more about the meetings between the NKF Board of Directors and Congresspeople on Capitol Hill. 

We Can Fight CKD, Together

It's easy to be cynical about politics and politicians these days, but the experience taught me that our stories matter. When I shared my story, the Congressional offices I met with were sympathetic, concerned, and interested in solutions. And thanks to the NKF, we have legislative solutions that will help all people affected by kidney disease at all stages of their journey. We don’t need an army of actuaries or a legion of lobbyists to affect change — all we need are more advocates, more Voices for Kidney Health, to share their stories with lawmakers.

To learn more about NKF’s advocacy activities or to sign up to be an advocate like me, visit voices.kidney.org.