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.

The Big Ask, The Big Give

After a terrific workshop for kidney patients and their families and friends on Sunday, I was initially inspired and encouraged at all the valuable resources and options available for finding a donor: paired donation (aka “kidney swaps”), social media vehicles for spreading the word, financial assistance for travel and lodging, and sophisticated fundraising plans. These exciting options were unthinkable back when we learned that my son Paul’s kidneys were failing. Yes, I was ultimately able to donate to him in 2006, and so glad I did, but we had no back-up plan if I hadn’t been able to donate. I was relieved to know that someday when Paul needs another transplant, that these options now exist.

Betsy, my co-author,* and I had been invited to be on a panel to tell our story and take questions at the National Kidney Foundation’s Big Ask, Big Give program at the University of North Carolina’s Rex Hospital in Raleigh, NC. It’s understandably hard for most people to go public about such a personal need (brother, can you spare a kidney?), and it’s easier for loved ones to spread the word. The program provided useful resources and concrete advice, with step-by-step plans on telling “your story” or your loved one’s. The cautiously hopeful attendees sounded resourceful and impassioned.

But when I couldn’t fall asleep that night, something was nagging at me, and my excitement turned to righteous indignation. Damnit, people facing kidney failure and their families shouldn’t need to think about fundraising or how to word the biggest ask of their lives. They have enough things on their plate. Soon my righteous indignation turned into outright anger when I recalled at least two attendees’ mentioning that their family member on dialysis had lost their job because of needing to miss so much work. What kind of a system allows these shameful situations to happen?

My inclination was to condemn the companies that had pulled the rug out from under these vulnerable employees, but then I realized that it’s not that simple, of course. Big companies can better afford to be supportive and accommodating in the face of frequent or long absences and the need to hold a job open. What about smaller companies or mom-and-pop establishments that are themselves just getting by? That’s why it’s the system that needs fixing. Sure, not all big companies go the extra mile anyway, so absolutely, let’s give a shout-out to those that do: in my case, RTI International. I benefited from a shared-leave program through which generous, anonymous colleagues donated leave time when I’d exhausted mine.

Humane and compassionate employment support at such a time ought to be a right, not a perk.

Living donors are now protected under the Family and Medical Leave Act (FMLA), but the FMLA applies only to government employers and to private employers with at least 50 employees. (And remember, that’s unpaid leave!) Incidentally, even the Americans with Disabilities Act (ADA), which mandates reasonable accommodations for people with disabilities, applies only to companies with at least 15 employees. I’m not an economist, but it seems like a no-brainer that we need to be providing subsidies or tax breaks to enable small firms to provide paid leave and job protections for donors and recipients.

For example, if federal laws (it shouldn’t matter what state you live in) ensured that no one could lose income (much less their job) to be a living donor, more lives could be saved. Sure, money isn’t the only consideration in someone’s decision to donate, but it’s very often a deal breaker to anyone without sick leave.

The recipient’s health plan covers the donor’s medical expenses, but few insurers, like United Healthcare, include any necessary travel and lodging costs for donors who need to travel far to the recipient’s transplant center. Our tax system should allow credits, not deductions, for kidney patients’ own medical expenses and for reimbursing their donors’ nonmedical expenses.

 In a recent post, I described the National Living Donor Assistance Center’s (NLDAC)’s proposal to expand its coverage to include lost wages and related childcare or eldercare expenses. NLDAC currently covers travel and lodging expenses, which is great, but lost wages and additional out-of-pocket expenses affect far more potential living donors than the need to travel. Some living donors spend thousands of dollars to offset their uncovered costs; at the same time, each one saves the healthcare system an estimated $145,000.

No one’s suggesting paying donors for parting with their kidneys–only that it shouldn’t cost anyone money to do so. Expanding donor assistance would go a long way toward making living donation financially neutral. It’s not only the cost-effective thing to do, it’s the right thing to do.

*on our book in progress: “The Greatest Gift: The Insider’s Guide to Living Kidney Donation.”