Talking from the Heart about Kidneys

I used to think that all donation advocates had to be well stocked with facts and figures to be effective. And then I discovered that the ability to humanize the experience of living donation and kidney disease for lawmakers was mostly all the data I needed. Fortunately, because of my research for my book on living donation these past several years, the facts also come out, in a natural, humanizing way.

Sure, learning that 100,000 people are waiting for a kidney in the United States makes an impression. But I suspect that hearing about a few of those individuals, and, for example, the “torture” that my just-out-of-college son perceived dialysis to be leaves a more lasting impression.

Last week I spent a day advocating for passage of the federal Living Donor Protection Act and other kidney health measures, as I’ve done before (most recently in my state, North Carolina, in the spring), by sharing my/his story (virtually) on Capitol Hill. This time it was part of a Community Advocacy Day, sponsored by the American Society for Nephrology, and its several partners, including the National Kidney Foundation.

Advocacy typically = Zoom these days. Here I am meeting with Sen. Tillis’s legislative correspondent, Garrett Daniel, and my fellow advocates: nephrologists Abhi Kshirsagar (UNC) and Gentzon Hall (Duke), and (camera shy) ASN advocate Bill Applegate.

The Living Donor Protection Act has strong bipartisan support in Congress at a time when that’s so hard to come by. Who wouldn’t want to ensure that healthy living donors can’t be denied or overcharged life insurance and that their jobs be protected when they take off a few weeks for the surgery and recovery? And yet it’s been kicking around Congress since 2014.

We also advocated for improved access to telehealth and increased funding for research, innovation, and early detection of kidney disease. In other words, let’s put the money at the front end to prevent kidney failure, rather than the back end on dialysis and transplant. The U.S. government puts less than 1% into research, out of the billions that Medicare spends on kidney care.

Most people don’t know much if anything about their kidneys or donation or transplant until it hits close to home. Don’t wait till then–kidney failure is not reversible. Make an appointment with your medical provider, and ask your doctor to check your kidney function.

For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

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