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.

Photo by Pixabay on Pexels.com

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.

Preparing The Greatest Gift

My co-author, Betsy Crais, and I have been busy making revisions and updates to our book manuscript (The Greatest Gift: The Insider’s Guide to Living Kidney Donation). With the pandemic necessarily dominating the news and publishing world, this seemed like a good time to concentrate on honing our manuscript rather than sending out proposals. As we prepare the final chapters, we’re noticing some key trends since we started working on it 5+ years ago (back when we were both working full time and unable to devote much time to it):

Social media is playing a bigger and bigger role in kidney patients’ search for donors. I get requests every week to “like” a page to help someone find a donor. The National Kidney Foundation’s Big Ask/Big Give workshops, which Betsy and I have addressed in Chapel Hill and Raleigh, NC, encourage and train kidney patients and their families and friends in how to get the word out that way.

Potential donors are learning that they don’t have to be related to their recipient. Perhaps because of the social media involvement, more nonfamily members are volunteering to donate to a friend, neighbor, or colleague. Antirejection meds have come so far that, though well-matched pairs still offer the best chance of long survival, the so-called “perfect match” is far from being a requirement for a kidney transplant.

Paired donation (aka “kidney swaps”) have really taken off. Let’s say, you want to donate to Alice but you’re not a match; maybe Jane, who wanted to donate to Bill but couldn’t, can donate to Alice and you can donate to Bill. Computer formulas and kidney registeries make it all possible. In 2006, when I donated to my son, paired donation wasn’t even on our radar, and no wonder: there were only 72 such transplants in the United States that year. In 2019, there were 1,118! It doubled just in the past 5 years.

Nondirected donors are playing a bigger role. These rare individuals (a few hundred each year in the United States) make the selfless decision to donate to someone they don’t know–and may never meet. Sometimes their donation can initiate a domino chain of kidney transplants across several transplant centers.

Photo by Pixabay on Pexels.com

As we start to wrap up The Greatest Gift, I may post a few samples here from time to time.

Donation and Hollywood Endings

When we see a movie or TV show on a medical topic we know a lot about, we may roll our eyes when they take dramatic license, but we often just shrug it off. When the subject is something people are less familiar with, like organ donation and living donation, a flawed story can make a lasting and dangerous impression. Donate Life Hollywood is trying to do something about it.

Story lines that mislead and even scare people (like a macabre thriller about an organ recipient) from registering as donors can cost lives. With 112,000+ people usually waiting years for an organ from a deceased donor in this country, every time someone decides not to register as an organ donor, the wait is that much longer. Donate Life Hollywood wants to hold Hollywood accountable and offer filmmakers accurate, real-life stories from donor families, recipients, and living donors.

You can download the free app, which offers an easy, convenient way to “report-a-myth.” The app lets me know when a new movie or TV episode with a donation-related story is about to air, so donors and advocates like me can check it out and let them know if the writers got it right. The app also includes up-to-date information on organ, eye, and tissue donation, with FAQs, and resources. Check out the Activate App here.

Admittedly, some exciting aspects of medical dramas are comparatively innocuous. One of my favorite TV shows years ago was “ER.” My heart would race as my favorite docs ran out to the parking lot when an ambulance pulled up. I think I knew that wasn’t happening much if ever in real life. (That certainly wasn’t the case when we came tearing up to the hospital 30 years ago as I was giving birth to my daughter in a Subaru—but that’s another story.)

There are already plenty of harmful myths about organ donation and living donation—we can’t afford to let Hollywood perpetuate them. Let’s help educate the story makers and be part of the solution!

Did You Know?

Whether you’re a donor, a potential donor, or a kidney patient looking for a donor, here are a few intriguing facts to share about living donors:

  1. More than a third of living kidney donors are over 50 years old (I was 58 when I donated to my son), and the proportion is rising.
That’s me, right before a memorable trip to Chicago to help set a Guinness World Record for largest gathering of living donors.

2. Most living donors say they would do it again (often adding “in a heartbeat”).

3. Many living donors were inspired to donate to someone they didn’t know because of an eye-opening article they read or a moving Facebook post that resonated with them.

4. Nondirected donors–empathetic people who choose to donate to someone they don’t know and may never meet–represent only about 3% of living donors in the United States, but the percentage is on the rise.

5. Nondirected donors often save multiple lives by initiating a swap (aka a paired donation) or even a chain of transplants. If Donor A isn’t a match for their intended recipient (Recipient A), but the nondirected donor is, he or she donates to Recipient A, and Donor A donates to someone else who wasn’t a match for their recipient, and so on.

6. Most living donors (in an informal survey) own rescue dogs. (A shout-out to WELD San Diego for that interesting statistic!)

7. And, of course, most living donors are women (another shout-out to WELD, which, by the way, stands for Women Encouraging Living Donation).

Donors Need to Know All the Good News, Too

I just saw that this site’s views for April were the second highest since I launched the website 14 months ago. I noticed something else: the record month, October, happened to feature the same blog I posted about last week on Twitter and in a couple of living kidney donor support groups on Facebook: “Just How Unlikely Is It for a Donor to Need a Transplant?” (spoiler alert: very!). The obvious explanation here is that everyone loves good news, but the less obvious realization was that so many kidney donors didn’t already know that.

It’s important for living donors and potential living donors to have all the facts, including the bad, of course. But informed consent means it’s just as important that everyone know the encouraging news about living donation without sugarcoating it.

Another example of “neglected good news” is that the lower kidney function that’s common among living donors does not mean we have stage 2 or 3 kidney disease. eGFR, the scale that estimates overall kidney function and level of chronic kidney disease, really speaks of people, usually with two kidneys, whose kidney function is in decline. Donors, on the other hand, once they stabilize after donation, hit a new normal, which, in the absence of other indicators, is perfectly fine.

More important is the creatinine reading, which indicates level of toxins and reflects how well the kidney is working. For example, nearly 14 years after donating to my son, I still have an excellent creatinine level (0.85 on a recent test)–not just excellent for a donor, excellent for anyone!

I’m all for learning all the information that’s out there, and hope to see long-term lifetime follow-ups on all living donors. But in the meantime, we can all use a little reassurance these days. Let’s take it where we can.

Reimburse Living Donors’ Lost Pay–and More

Several months ago I was excited to learn that financial assistance for living donors was going to be substantially expanded—encompassing more people and for more kinds of noncovered expenses, like lost wages, childcare, and eldercare. As a living donor and advocate, last year at this time I provided public comment on the subject and followed up with emails to members of Congress. In July the incredible Executive Order on Advancing Kidney Health touted a major expansion of reimbursement for donor expenses, in addition to efforts to improve early detection of chronic kidney disease, encourage medical innovation, and lots more.

The devil is always in the details, which take time. Ever since, I’ve been eagerly awaiting the good news. The current financial eligibility limit, at 300% of poverty line (or $38,000), has long been way too low. Advocates have argued persuasively for increasing that to 500% ($64,000)–ideally 600%–to be able to serve the majority of living donors rather than a small fraction. For donors who don’t have paid sick leave, these extra expenses are often a deal breaker for people who might otherwise volunteer to save a life by donating their kidney.

Photo by Skitterphoto on Pexels.com

The proposal they came back with this week offers just pocket change: a tiny increase in the eligibility cutoff to 350% (or $45,000)!

Also, wait for this: the assistance is still tied to the recipient’s income, not the donor’s. So it does an injustice to both potential donors and recipients by putting the onus on the latter to reimburse the donor for nonmedical expenses (testing and surgery are covered by the recipient’s health insurance, be it private, Medicare, or Medicaid). The government apparently thinks it reasonable that the family of the recipient, desperately trying to find a living donor and incurring all sorts of costs themselves, when they’re facing major surgery, should have to worry about trying to reimburse their potential donor.

There’s another glitch in tying eligibility to the recipient’s income—what about nondirected donors (those who decide to donate to an unknown recipient they may never meet)? They’re out of luck here. Now, wouldn’t you think you would want to roll out the red carpet for these Good Samaritans instead of shutting an aid door in their faces?

The Executive Order was clear in its intention to expand assistance to encourage living donation. So if you’re a donor or are considering donating–or you’re a kidney patient looking for a donor…please email Frank Holloman at donation@hrsa.gov and tell him that HRSA (the federal Health Resources and Services Administration) needs to go much further in supporting living organ donors. Come to think of it, no matter what your connection to living donation is, contact HRSA, please!