Kidneyversary, No Matter What

This weekend marked 14 years since I donated my kidney to my son, Paul, who was 26 at the time. (He told his side of the experience in a post last year.) I’m happy to report that both of my kidneys are still doing well in their respective homes, so we naturally celebrate this important event every year at this time.

Like everyone else, we had to change a few things this year–even more than you might think because my arm is in a long cast (see photo). I’ll spare you the gory details, but I fell and broke my wrist last week. (And he couldn’t eat on one side of his mouth because he needed to have a tooth extracted this week.)

Yes, my husband, son, and I are all smiling under our masks. Photo by our delightful, socially distanced, next-door neighbor, Gina Lacava.

So, no steaks or fancy restaurants, but as you can see, none of that stopped us from celebrating–socially distanced, of course — this significant, life-changing event that trumped our current woes.

Come to think of it, kidney health is worth celebrating for everyone, every year. Don’t take yours for granted.

Don’t All Donors Deserve Donor Shield?

I’ve been emailing, calling, and visiting state legislators and members of Congress for a long time about supporting and protecting living donors. I don’t mean the feel-good kind of support that calls us “heroes” and “awesome folks” but takes no action. I’m talking about finding meaningful ways to remove hurdles that can be deal breakers for so many people who might otherwise consider donating their kidney. While Congress and legislators have been dragging their feet, a terrific model plan has been hiding in plain sight: the National Kidney Registry’s Donor Shield.

First, a little background that may be familiar to some of you: nearly 100,000 people in this country wait years for a kidney, but only about 23,000 kidney transplants were performed last year. Meanwhile, thousands die every year because they didn’t get a kidney (or other organ) in time. For the foreseeable future, our best hope of dramatically changing those appalling odds is through living donation. So, simply put, we need to make it easier for people to manage being live donors.

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How? For starters, by providing paid leave for all living donors for donation-related time off work–not just for federal and some state employees (not everyone has paid sick leave, and those who do shouldn’t have to use up their leave time); reimbursing for travel and lodging costs if donating far from home; and covering “incidental” expenses (which can feel anything but incidental: think childcare or eldercare).

You may already know that NKR facilitates paired donation (aka kidney swaps) through the world’s largest database of potential recipients and live donors. If you’ve never heard of Donor Shield, remember that name even if you don’t plan to be part of a paired donation. NKR automatically provides Donor Shield, which encompasses those common-sense protections and so much more, to all its living donors. But if you donate at any of the 90 U.S. transplant centers that’s affiliated with NKR– even if it’s not a paired donation!–you would get Donor Shield, too. I’m happy to see that the University of North Carolina Hospitals, where I donated to my son in 2006, is now affiliated with NKR.

The transplant center pays the cost, so there’s no charge for the donor. And there’s no cost to the recipient either. I hasten to add that because I was shocked–and infuriated–to learn that the National Living Donor Assistance Center bases its eligibility for donor assistance on the recipient’s household income. NLDAC apparently figures that the recipient, who’s already contending with surgery and lost work time, should simply reimburse the donor for any such expenses.

In addition to the benefits and protections for living donors mentioned above, which legislators and federal agencies have been studying for years, Donor Shield also includes additional attractive features, such as providing legal support in the unlikely event that a donor is fired for taking time off to donate or encounters insurance discrimination; and in the rare event that a donor later needs surgery for a donation-related complication that isn’t covered for any reason, they’ll cover it along with lost wages, and travel and lodging expenses for the donor and a companion.

Not only are these measures the right thing to do, they obviously save lives by making more transplants possible and taking people off the waitlists. If the moral argument doesn’t sway the powers that be, the economic argument should. Shortening the wait for a kidney, and reducing or even avoiding time on dialysis, saves hospitals and the federal government millions of dollars.

Even if the transplant center you’re donating at isn’t affiliated with NKR, it’s worth asking if they would agree to provide Donor Shield (they can obtain it). The more donors who request it, the more likely centers are to get on board. If only paired donation, NKR, and Donor Shield had been available back when I donated!

A Time to Celebrate

I think it’s only fair to warn you that this short post has absolutely nothing to do with kidneys, organ donation, or advocacy. But today is a special day, and attention must be paid. Today, amazingly, marks 50 years since my husband and I got married on a rainy Friday night in New York City. Months ago, when we were searching for special ways to celebrate this special wedding anniversary, we considered (1) throwing a party; (2) renewing our marriage vows; (3) planning a trip to Tahiti, which we’d considered for our 10th anniversary but couldn’t afford; (4) staying at New York’s Plaza Hotel, as we did on our wedding night; (5) splurging on a photographic safari to Botswana, which we actually did book for September but will almost definitely reschedule for a year later…and well, we were still dreaming up fun ways when covid turned the world—and our priorities–upside down.

So, instead, we’ll open a nice bottle of wine, maybe put on a Jacques Brel CD (we recited the lyrics to “Quand On N’a Que l’Amour—If We Only Have Love—at our wedding), and probably enjoy a special take-out meal. And we will make a toast to celebrate how incredibly fortunate we are, in the midst of all this suffering, sorrow, and shared outrage. (Thanks for indulging me.)

Hmm, maybe this topic does have something to do with kidneys, organ donation, and advocacy after all!

Does Your State Offer Paid Leave to Donors?

In the course of updating our book manuscript on living kidney donation, we were hoping to see lots of progress in job protections and financial assistance–such as paid leave laws and tax deductions/credits–for living donors. Well, the good news is that there has been some progress. More states are offering paid leave and tax benefits for donors’ unreimbursed costs for travel, lodging, lost wages, and so on. The bad news? You guessed it—not nearly enough.

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First the good news:

Job protections. Living donation is now eligible for unpaid leave and other protections under the Family and Medical Leave Act–so your job or equivalent has to be waiting for your on your return. Federal employees and most states grant such protections in the form of leave (paid or unpaid).

Paid leave: All federal employees receive at least 30 days paid leave for organ donation; most states offer paid leave of various lengths to their state employees. A few states (let’s give them a shout-out: California, Hawaii, Louisiana, and Minnesota) require private employers to provide paid leave for living donors. A few more (Arkansas, District of Columbia, and West Virginia) offer incentives to encourage private employers to do so.

Tax credits: Four states provide tax credits (that is, dollar for dollar) for unreimbursed expenses by living donors (shout-out: Idaho, Louisiana, Maryland, and Utah).

Tax deductions: About half of the states offer significant tax deductions.

The bad news: What about all the others? Why aren’t all states offering paid leave to their employees and providing incentives to private employers to offer paid leave? It’s the right thing to do and actually saves money compared with the costs of kidney patients’ staying on dialysis. Why aren’t the rest of the states with a tax code at least offering tax deductions? And why aren’t those with tax deductions offering tax credits instead?

If you’re considering donating, find out what the law is in your state before you talk to your employer. Be sure to get all relevant details, because there are frequently requirements about how many hours a week you work or how many people a company employs in order to qualify. In any case, call or email your state representatives and tell them to do the right thing. Don’t let them merely pay lip service to supporting living donation–living donors deserve every state’s concrete support.

Contact me for a state-by-state list of donor leave laws and tax regulations compiled by the National Kidney Foundation.