Kidney Advocacy 101

I just came back from Washington, DC, where I participated in in-person meetings on Capitol Hill–for the fourth time–to discuss ways that Congress can and must support the kidney community. As I type these words, I realize that the kidney community may sound like a small portion of Americans, a discrete segment of the population.

Unfortunately, that’s hardly the case.

Numbers typically don’t leave a lasting impression on most of us. Reading the oft-repeated statistic that 37 million people in this country, one in seven, are estimated to have chronic kidney disease starts to lose its shock value. Dramatic as that is, however, it’s usually followed by the shocking statement that 90% of them don’t know it.

It’s likely that you know someone who’s among the people in that estimate–maybe even a loved one.

Before my son was diagnosed with chronic kidney disease about 20 years ago, my family thought, like many, that kidney disease was something that just happened to other people. Not true, of course. And when people hear that my son’s condition was caused by a strep infection, they quickly realize that what happened to our family could happen to any family.

So our “asks” for Congress this time were threefold:

–Support the sweeping and way-overdue modernization of the antiquated and inefficient organ allocation system with funding: $67 million (the bill authorizing the modernization was passed in 2023).

–Co-sponsor the bill to expand and improve access to home dialysis (introduced in the last session of Congress but needs to be reintroduced in the new session).

–Support a brand-new and much-needed initiative to expand education and screening for kidney disease. Right now kidney patients don’t get thorough counseling until Stage 4 of chronic kidney disease–that is, just before their kidneys fail in stage 5. Early screening and detection for everyone is vital in catching declining kidney function in the early stages, when it’s still treatable.

So whatever the particular legislative “asks” at a given time–and whether I go to Capitol Hill as part of a delegation from the National Kidney Foundation, as I did last week, or the American Kidney Fund, as I did last May–my advocacy has a very simple goal.

To keep this vital topic on Congress’s radar. Because it’s in virtually everyone’s interest.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.