Kidney Vouchers Are Even Cooler Than You Thought

My last post, “Kidney Swaps and Vouchers and Chains, Oh My!” got a very positive reaction. It was a real feel-good story about a living donor I know who made a new kidney possible for her son even though she couldn’t donate to him directly, thanks to a voucher system. Several people outside the kidney community were blown away by the idea of vouchers, which is part of the National Kidney Registry’s advanced donation program. Not surprising—it is pretty cool. I realized though that I hadn’t explained some of the amazing ramifications of a voucher system.

I’ve heard many living donors who’ve given to a friend or acquaintance–or even someone they didn’t know–report that their families were very upset with them. Can you imagine how shaken these donors were to encounter not just concern but sometimes outright anger as they contemplated the most selfless act of their lives? What if your mother or I need one? What if one of your kids ever needs a kidney (often asked of childless couples and unattached individuals)?

The donor’s answer usually was that they felt compelled to respond to someone’s very real need now and couldn’t refuse to help that person because of a what-if that might never occur. Many of these donors say they felt confident that an equally generous person would step up at such a time of need. One African American woman I was on a panel with recently said because live donation is still uncommon in the black community, her mother was particularly uncomfortable with the idea of her donating to someone she didn’t know. She stopped her mother’s protests once and for all, though, by asking simply, “If I were the one who needed a kidney and had no family donor, wouldn’t you want someone to come to my aid?”

The young man I wrote about in my last post was fortunate to get his live-donor kidney soon after he needed it, just a few months after his mother’s donation. Vouchers can be redeemed years, or even decades, after the donation if they’re not needed right then.

I remember reading about a healthy man in his 60s whose granddaughter had kidney disease and would probably need a kidney transplant in a few years. He feared that he might not be healthy enough to donate by then. With a voucher system, he was able to donate soon to improve the child’s chances of getting a live kidney if and when she needs it. There are no guarantees that a good match will be available at that point, of course, but having the voucher would definitely make her wait much shorter.

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So potential living donors who encounter their families’–or their own–troubling “what if” questions, actually have a practical response. NKR vouchers are increasing the number of people willing to donate a kidney—and saving more lives.

Kidney Swaps and Vouchers and Chains, Oh My!

I was delighted to hear from fellow WELD (Women Encouraging Living Donation) member, Michele Hughes, that her son Dan had just had a successful kidney transplant, at New York-Presbyterian/Weill Cornell Medical Center. Like me, Michele had wanted to donate her kidney to her 20-something son with kidney disease. In their case, though, it wasn’t possible. But this is 2019. So, a few months ago, Michele donated her kidney at Vidant Medical Center in Greenville, North Carolina, to a stranger on Dan’s behalf. In return, they received a prized voucher through the National Kidney Registry for a compatible kidney for her son.

A picture of WELD members wearing DONOR tee shirts and holding signs that say "Donate Life." The caption tells where Michele is standing.
Michele is in the front row, third from the left (not counting our littlest WELD member). That’s me, second from the right.

NKR has a huge living-donor pool in the United States; it tries to find the best match for a potential recipient so that if the intended donor isn’t a match for them, they can do a “swap” or even form a kidney chain.

Yes, these amazing options make everything so much easier than it used to be. But anyone whose loved one has had a life-threatening condition knows how stressful and overwhelming navigating the system can be. Fortunately, Michele’s family was closely supported by a knowledgeable friend who’s a living donor himself, Ned Brooks.  I recently heard Brooks’s fascinating TED talk, “What Makes a Person Decide to Donate His Kidney to a Stranger?

In 2015 Brooks, a retired businessman, decided to donate his “spare” kidney to a stranger to set off a chain of three transplants. Like many of us, he found the living-donation experience so uplifting and life changing that he was determined to spread the word. He went so far as to found a nonprofit, Donor to Donor, to publicize the kidney crisis and to encourage and facilitate living kidney donation. In addition to sharing valuable information and donation stories, the organization matches potential kidney recipients with previous kidney donors/advocates who volunteer to help them find a donor.

Congratulations to Michele and her son. Wishing Dan a smooth recovery.

Donor to Donor will sponsor a (free) one-day Volunteer Kidney Donor Advocates Conference April 24, 2020, in New York City. Details to come.