More Living Donors Could Get Financial Help!

High on the list of ways to encourage living donation (after educating people about living donation, of course) is to make the experience financially neutral. That is, not that live donors earn money for their organs (though some experts have made a case that that actually might be done efficiently and fairly)–only that no one lose money in trying to save someone’s life (I think we can all agree on that part).

Well, guess what? A major source of aid, the federally funded National Living Donor Assistance Center, says that about 70% of U.S. households meet its income requirements to apply for living-donor financial aid.

If you already know that the recipient’s insurance (including Medicare) covers the donor’s evaluation and surgery (and some major insurers now cover travel expenses), you might wonder why a donor would need additional financial assistance. Let’s consider all the things that often need to be in place for someone to donate–apart from a clean bill of health and matching-related issues.

1–What if a donor lives hundreds or even thousands of miles from the recipient’s transplant center? Transportation and lodging expenses for a few days of evaluation plus surgery and post-op time can add up pretty quickly. They can easily be a deal breaker.

2–What if a potential donor doesn’t have paid sick leave? Two to four weeks lost pay for recovery plus time off work for evaluation tests and appointments can be prohibitive. So, covering lost wages is crucial.

3–And what if the donor needs to pay for childcare or eldercare for those weeks? That could clearly tip the balance, so reimbursement of dependent care expenses is right up there too.

Fortunately, not all donors require all three of those essentials. Back when I donated to my son in 2006, we were lucky that the transplant center was right in our town, I had sufficient paid leave between my own plus my colleagues’ kind shares, and we had no dependent care expenses.

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But for people who do, any one of those factors could nix the idea for donors who are otherwise eligible. Such expenses can run into several thousand dollars. Happily, NLDAC grants, usually in the form of a prepaid credit card, are sizeable: up to a total of $6,000 per donor.

You can download guidelines and application forms from the NLDAC website. Funds are available only for those donors who have no other reimbursement options, be it insurance, state or federal funding, or (for me, this is the part that still rankles) the recipient’s funds. Both donor and recipient must provide income and asset information, but the recipient’s matters most. I guess the assumption is that recipients “should” reimburse their donor if need be.

True, if a recipient doesn’t meet the guidelines but says he or she can’t afford to reimburse the donor, there’s a hardship exception, requiring more paperwork. In other words, at a time of ill health, lost wages, and great family stress, the recipient is expected to prove that he or she can’t help the donor. Shouldn’t the donor’s income be the major factor if we want “to reduce the financial disincentives to living organ donation” (per NLDAC’s mission statement)?

NLDAC has been a major source of financial assistance for nonmedical aspects of donation for many years. Until late 2020, that assistance was mostly limited to travel and lodging, so as a donation advocate, I certainly applaud the major expansion.

NLDAC needs to get the word out so more potential donors can take advantage of this much-needed additional assistance. I’m happy to help. Please do pass it on!

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.

Contributor Spotlight: Doing All They Can to Help Donors Donate

Some of the most dedicated, ardent advocates of living donation I know are neither living donors nor transplant recipients themselves. That’s surely the case for these two contributors–Tammy Wright and Jenine Lewis–to our book, The Insider’s Guide to Living Kidney Donation.

For Tammy, who has helped donor and recipient pairs as a transplant coordinator for nearly 30 years at Sharp Memorial Hospital in San Diego, it’s a profession she deeply loves. For Jenine, who came ever so close to donating one of her own kidneys, it’s a passion and an avocation.

Tammy Wright, a veteran donor nurse coordinator.

You may think that once someone is approved as a donor, it means smooth sailing ahead and just depends on everyone’s schedule. Alas, that’s not the case for many donors and recipients. Even before COVID came along, life always had a way of throwing complications in people’s paths even when the stakes are frighteningly high.

Example? Recipient gets so sick before the scheduled transplant that it has to be postponed indefinitely. Or donor gets the flu and needs to reschedule. Or an overweight donor learns that he’s prediabetic and has to start an extended period of dieting and nutrition counseling. I could go on.

In Tammy’s book chapter, “Helping Overcome Transplant Obstacles,” she relates several daunting situations she has helped her patients navigate. Many of the creative solutions she draws on were not available when she started out in this profession (or even when I donated in 2006). Paired donation (kidney exchange), notably, often holds the answer to a donation problem, and Tammy’s chapter describes some pioneering efforts.

Tammy movingly relates how she’s worked–and cried–with patients at each new disappointment. Named “Nurse of the Year” at Sharp in 2020, Tammy is as modest as she is private. “I am pretty boring but love what I do and enjoy helping people get transplanted,” she says simply.

When she’s not working, Tammy enjoys being active in Transplant Trekkers, a nonprofit San Diego group dedicated to raising awareness of living organ donation. (She proudly admits also to being a dog lover.)

Jenine Lewis, a donation advocate, seen here at Yosemite National Park with her husband, Alan.

Like Tammy, Jenine is a San Diegan who does all she can to support living donation, through Transplant Trekkers. Jenine’s book chapter, “How a Would-be Donor Became an Advocate,” relates how she set out determined to donate her kidney to her good friend. After a very long, circuitous route, she finally got the green light for donor surgery in 2016 until…

We’ll let Jenine’s chapter tell what happened and why. Though she was initially heartbroken about not being able to gift her own kidney, Jenine says she soon learned that she could provide valuable help to other potential donors. She’s been an active volunteer in raising awareness of living organ donation in the San Diego area. She often counsels others who have been similarly disappointed and shows them how they can still help their intended recipient.

A youthful grandmother of three, Jenine enjoys hiking, as you can see from the photo. Obviously, Transplant Trekkers, which interestingly raises awareness of living organ donation through virtual, customized hikes, is a perfect fit.

Fun Fact: Transplant Trekkers is the (independent) re-creation of the original WELD (Women Encouraging Living Donation) San Diego group. WELD later teamed up with Donate Life America and added chapters around the country. It now accepts men, so the acronym officially stands for We Encourage Living Donation.)

Diane Brockington, herself a living donor and a tireless champion for living donation, founded WELD in 2015. She now leads the original San Diego group, which renamed itself the Transplant Trekkers. It was Diane who introduced me to WELD and all these impressive women.

Living Donors Climbing Mt. Kilimanjaro?

Yes, you read that right.

In a recent magazine interview, I was explaining that I still lead a healthy active life, at 73, about 15 years postdonation. I was never an athlete, but I knew plenty of donors who ran marathons, I said. Being a donor typically rules out only activities like contact sports–and, say, mountain climbing, I joked.

Well, I’m happy to report that the joke was on me.

Twenty-two members of Kidney Donor Athletes from across the United States (and one from Canada), plan to do just that next month (March 2022). They’re training now to climb Mt. Kilimanjaro, Africa’s highest peak! I’m told you don’t need technical mountain-climbing skills per se for this one. However, you certainly need to be in excellent physical shape for any expedition that starts at the equator and gets colder and colder till it reaches the arctic zone at the top.

I was excited to see that one of the donor climbers, Matthew Harmody, hails from my state, North Carolina. In fact, he donated at the same transplant center as I did: the University of North Carolina at Chapel Hill.

Matt and I have something else in common: we both donated when we were in our late 50s. (More than a third of living donors are over 50.) Admittedly, that’s where the commonalities end. Unlike me, Matt is clearly no wimp.

Now 60, Matt, an emergency physician from Southern Pines, NC, was an endurance athlete (think ultra-marathons and 100K trail races) long before his 2017 donation. Also, he was a nondirected donor–he gave to someone he has yet to meet. (I gave my kidney to my adult son.)

Matt’s donation was in memory of his father, who had kidney failure and would not accept a donation from a family member (that’s not an uncommon parental instinct). “I felt that if I couldn’t help my father, I could at least make a difference in someone’s life with a non-directed kidney donation,” Matt explained.

Kidney Donor Athletes founder Tracey Hulick was also an ultra-athlete/nondirected donor in 2017. She formed the nonprofit in 2018 to encourage living donation and of course to inspire other athletes.

But why the dramatic One Kidney Climb?

“KDA is using this climb to bring awareness to living donation, demonstrate what is possible post-donation, and to launch initiatives which inspire, support and educate people about the experience of living donation,” according to the website. The March scheduling is significant: the group plans to reach the summit on March 10, World Kidney Day. (BTW, March is National Kidney Month in the United States.)

Come to think of it, Matt and I do have a few more things in common:

1-We’re both in excellent health, have good kidney function, and don’t see a nephrologist.

2-For pain relief, we opt for acetominophen (aka Tylenol) instead of ibuprophen (or other NSAIDS, which are all hard on the kidneys).

3-Most of all, we’re both champions for living donation.

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

Zooming into DC for a Unique Virtual Kidney Patient Summit

Instead of flying to Washington, DC, in March with other advocates for the National Kidney Foundation Kidney Patient Summit as planned pre-COVID, we Zoomed and Hopped in last week for virtual meetings on Capitol Hill. Admittedly, virtual was less of a kick than the real thing, but it was surprisingly effective in garnering cosponsors for important pieces of legislation.

I was excited to meet with members of Congress and/or their legislative staffers to share my personal story of donating to my son and to explain the importance of a few key pieces of long-overdue legislation: the federal Living Donor Protection Act (S511/HR1224), which prevents insurance companies from discriminating against donors (I’d earlier met with my state legislators about a state version); the Immunosuppressive Drug Coverage bill (S3353/HR5534), to safeguard a kidney recipient’s precious transplant by continuing coverage of antirejection meds for the life of the transplant, instead of cutting it off at 36 months for recipients not otherwise Medicare eligible.

Given that chronic kidney disease is so widespread–about 37 million Americans have it–and underdetected–the vast majority of them don’t know it yet–we’re also asking for funds for a new Kidney Risk Campaign.

“Are You the 33%?” is a simple quiz to help raise public awareness that one in three people in this country is at risk for kidney disease. Actor/advocate Wilmer Valderrama is helping to spread the word in both English and Spanish. The risk is particularly high among African Americans and Hispanics.

Perhaps the highlight of our eight meetings was the one with my long-time congressman, Rep. David Price, who has been very supportive of the kidney community. He’s been a cosponsor of the Living Donor Protection Act for a long time and just agreed to do the same for the Immuno Drug bill! If there’s an appropriations bill before year’s end, he was also receptive to supporting the Kidney Risk Campaign funds.

Here I am meeting with Rep. David Price, his legislative director, Nora Blalock–thank you both!–and my fellow NKF advocates.

I learned a lot and “met” a lot of interesting, extremely dedicated people, like my joint North Carolina-Georgia teammates pictured here: Stuart Miller (a transplant recipient who led our group) and Cara McKinney (NKF’s exec director for Georgia, Alabama, and Mississippi) from Georgia; and, from NC, Michael Phillips, a transplant recipient who survived COVID (sadly, 20 of his relatives also contracted it); and Chris Rusconi, chief research officer for the Polycystic Kidney Foundation, a fellow Triangle resident.

We raced from meeting to meeting by catching a Zoom. It was hectic but very gratifying (and my feet didn’t hurt one bit!). Afterward we compared the day’s highs and lows with other advocates. It all definitely whet my appetite for repeating this experience in person someday.

Helping Donors and Would-Be Donors, 1 Visitor at a Time

Well, this is exciting: I just hit the 5,000-visitors mark–and more than 7,000 views! I launched this site officially last year with a blog post, fittingly, on National Kidney Month and National Women’s Month–and what these amazing specimens have in common.

As a living kidney donor myself (I donated to my son in 2006), my goals for the site were simple:

Photo by Pixabay on Pexels.com

“… to help kidney donors and would-be donors by sharing my experience here along with candid, accurate information; by debunking myths; and providing resources.”

I’m still doing that and hoping to assist–and perhaps inspire–one would-be donor at a time, if need be. I love getting questions and direct emails from visitors to the site. The Greatest Gift: The Insider’s Guide to Living Kidney Donation–the book I’m writing with Betsy Crais, a living-donor kidney recipient–is getting closer to publication. More on that in coming months!

I’ve always welcomed feedback. If you have any suggestions for the site, I’d love to hear from you: carol.kidneydonorhelp@gmail.com

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.

Photo by rawpixel.com on Pexels.com

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 you’re not part of 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 Donor Shield premium, 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, Donor Shield will cover it along with lost wages, and travel and lodging expenses for the donor and a companion. That’s at any point, no matter how many years after the donation. And there’s no income-based eligibility for donor or recipient.

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!

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? Pass It On!

Whether you’re a donor, a potential donor, or a kidney patient looking for a donor, here are a few intriguing facts everyone should know 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 14 years ago), and the proportion is rising.
That’s me, right before a memorable 2018 trip to “the Bean” in Chicago to help set a Guinness World Record for largest gathering of living donors.

2. Most living donors, like me, 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–now represent about 3% of living donors in the United States, but the percentage is on the rise.

5. Nondirected donors can save multiple lives by initiating a swap (aka a paired donation, as a friend did in advance for her son)–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 pets. (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–yes, they now include men in their growing ranks).

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!