Paired Donation Options: Guest Blogger, Martha Gershun

I am very pleased to share this space with a fellow living donor/donation advocate (BTW, her excellent book, Kidney to Share, belongs on your bookshelf right next to The Insider’s Guide to Living Kidney Donation).

Beyond direct donation: what if your friends and family don’t match?

September 28, 2023

By Martha Gershun, Guest Blogger

As a living kidney donor, I often hear from people who have recently been diagnosed with End Stage Renal Disease (ESRD) or have a relative who is a kidney patient. These patients have usually been given little information about the advantages of living kidney donation and almost no guidance on how to maximize their chances of finding a donor. Many providers, who are highly experienced in the medical and surgical aspects of the procedure, have limited resources to help patients implement a successful donor search. Not surprisingly, they do not tell patients that other transplant centers may have a model that offers a better chance of finding them a kidney.

Family and friends often want to help, but finding a match can be hard. Even close biological relatives, such as siblings, may not match. The odds of a potential donor matching with a non-biological relative or friend can range from 1 in 100 to 1 in 100,000, depending on the patient’s blood type and other immunological markers. Upwards of one-third of willing donors are not compatible matches for their intended recipients.

There are several ways these generous people can still donate to benefit their designated kidney patient.

Many transplant clinics manage their own databases to form kidney pairs or chains, putting together a prospective donor/recipient pair with another donor/recipient pair (or multiple pairs in the case of kidney chains) to form matches. These heroic efforts can result in several transplants over a very short period of time. However, they rely on the hospital to find these matches within their own patient population.

There are also national nonprofits that work to find matches across hospital systems for pair or chain exchanges, significantly expanding the set of possible donors. The largest of these organizations, the National Kidney Registry (NKR) lists thousands of potential donors. If a kidney patient has a willing donor who is not a match, that person can donate through the National Kidney Registry to generate a voucher, which allows the patient they intend to benefit to receive a matching kidney from someone else on the Registry. Often these vouchers are “redeemable” within weeks or months, allowing the intended kidney patient to receive a new kidney very quickly.

The National Kidney Registry also has a program called Donor Shield, which provides a multitude of benefits to the donor, including reimbursement for travel, lodging, and dependent care; reimbursement for lost wages; the possible opportunity to donate at a hospital closer to home; home blood draws; and significant support beginning with the medical and psychological evaluation for all prospective donors and extending past the surgery.

Participating in the National Kidney Registry requires the patient to be listed at one of the 102 Transplant Clinics that are paying members of the National Kidney Registry.

The Alliance for Paired Kidney Donation (APKD) does similar work, facilitating paired or chain exchanges through its network of transplant clinics in 24 states. Donors who donate as part of an APKD kidney exchange are eligible for a robust package of support and protections that include wage reimbursement; travel expense reimbursement; and donor and companion life, disability, and complication insurance. Non-directed donors also receive APKD’s KidneyPledge, which comes in several forms, including an Advanced Donor Pledge, which will provide the opportunity to participate in an APKD kidney exchange for one named individual with known kidney disease, for the life of the named individual.

The benefits to this process are so significant – for the patient, who will likely find a living donor much faster, and for their donor, who will have the benefits of NKR’s Donor Shield or APKD’s KidneyPledge, that I encourage kidney patients to seek out a transplant clinic that is affiliated with one of these nonprofits, even if they are already listed elsewhere or have to travel to do so.

Finding a living donor can be difficult, but staying creative, flexible, and persistent can make it easier.

Martha Gershun is a nonprofit consultant and writer living in Fairway, KS with her husband Don Goldman. Her most recent book, Kidney to Share (Cornell University Press, 2021), with co-author John Lantos, MD, details her experience donating a kidney at the Mayo Clinic to a woman she read about in the newspaper. Gershun serves on the Expert Advisory Panel for the Kidney Transplant Collaborative and serves on the Board of the National Kidney Foundation Serving Kansas, Oklahoma, and Western Missouri.

Myths about Living Donors Do a Disservice to Everyone

Anyone who’s even casually perused this website or read many of my posts knows that I’m not brave and I’m not a risk taker–nor am I remotely athletic or even especially selfless. A lot of people think that living donors are many if not all of those things.

One of the reasons I launched this website, in fact, was because I realized that my story of donating to my son is more relatable than most: we had no family history of chronic kidney disease and no risk factors. And surely there was nothing on my part that would have suggested a propensity for becoming a living donor. When I tell my story to lawmakers or legislative staffers, I often conclude by saying sincerely “what happened to my family can happen to any family.”

So, in addition to writing about it here–and of course, in our book, The Insider’s Guide to Living Kidney Donation–sometimes I write about living donation on Medium (I write about other things too!). That is, I’m looking for an audience that might not have a connection to kidney disease, donation, or transplant. I want to remove the veil and help people see that most living kidney donors are average people. Please check out my latest article.

Photo by Jamie Street on Unsplash

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

Living Donors Don’t Get Paid (Yet) But the Rewards Are Still Real

Maybe you’ve heard that there’s a growing movement to find a way to fairly compensate living donors as a way to address the dire kidney shortage. It’s in the form of the Coalition to Modify NOTA (the National Organ Transplant Act). Simply put, NOTA is the reason that though we can pay people to donate blood or sperm or even to carry our baby, we can’t do the same for living donors. I’ll be writing more about this in the coming weeks.

But in the meantime, most people who have donated their kidney will tell you that the nonmonetary rewards of donation are undeniable (which by no means makes compensation any less justified). I update and dust off the blog post below every year or so because it really bears repeating.

Living donors have told me they’d nodded in agreement while reading it, and many people point out that even though these things are pretty obvious to donors, transplant centers usually don’t give them sufficient weight.

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In previous posts, I’ve described some of the enormous benefits of a live vs. deceased-donor kidney transplant for the recipient, but did you know that there are many very real benefits to the living donor, too? For family members or couples, the benefits are nothing short of dramatic. And I’m not just talking about feel-good points.

For a family, the practical benefits can be as concrete as money in the bank. A spouse or parent whose ability to work was limited by dialysis for a long period may gradually be able to resume a full-time schedule–maybe even launch a new career. That can substantially improve the family’s ailing financial health as well.

For family caregivers, particularly, donating a kidney to the loved one you’ve been caring for can bring huge relief. The reduced stress and no doubt improved sleep can have considerable benefits in energy, mood, overall outlook, and, as a result, even job satisfaction.

Then there’s the extraordinary motivation of saving a loved one’s life or turning it around. A living donor I know who’d donated to her husband described her decision as “purely selfish. I wasn’t about to lose him,” she insisted. I know the feeling.

Seeing someone you love–in my case, my adult son–who’d been pale, weak, and listless for months or years gradually become their old self again is pretty powerful. And a donor whose partner wasn’t interested in intimacy during a long period of ill health may see a positive change in their relationship.

Want to improve your social life? Give your partner a kidney! Couples who have been uncomfortable for a long time about socializing—whether because of physical obstacles or simply due to the dialysis patient’s lack of energy or interest—may soon be able to enjoy evenings out with friends or family.

For anyone who donates a kidney—even to someone they don’t know—the benefits are nearly universal:

The feeling of personal gratification is indescribable. Knowing that you’ve helped give someone—anyone—a shot at a healthy, productive life—is an extraordinary feeling. Living donors in studies report a boost in self-esteem, and 9 out of 10 say they would do it again. Through donor-support groups I’m active in on Facebook, I’ve been struck by how life changing the experience has felt for most of us, including the few who have later had complications or whose recipient didn’t fare well for as long as expected.

A fascinating journal article inspired this post. The researchers argue that for the above reasons and more, transplant centers considering a potential donor’s relative risk might do well to acknowledge and give weight to the undeniable tangible benefits for certain donors.

“Van Pilsum Rasmussen, S. E., M. Henderson, J. Kahn, and D. Segev. “Considering Tangible Benefit for Interdependent Donors: Extending a Risk–Benefit Framework in Donor Selection.” American Journal of Transplantation 17, no. 10 (Oct. 2017): 2567-2571.

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

Minority Donor Awareness Month

Like most “awareness months,” this one should get more attention year ’round. Because minorities are disproportionately affected by chronic kidney disease, they are also disproportionately underrepresented when it comes to organ donation. National Minority Donor Awareness Month is a collaborative initiative of the National (Organ, Eye and Tissue Donation) Multicultural Action Group (NMAG) designed to change that.

NMAG’s objective is to bring heightened awareness to donation and transplantation in multicultural communities; the focus is on African American, Hispanic, Asian/Pacific Islander. and Native American communities.

Black or African Americans are more than 3 times as likely, and Hispanics or Latinos 1.3 times as likely, to develop kidney failure compared with white Americans, according to the National Kidney Foundation website. That’s primarily because these minorities have much higher rates of the conditions that are the major risk factors for chronic kidney disease, namely diabetes, high blood pressure, and obesity.

Earlier this year I wrote here that action finally was being taken to address critical systemic inequities in access to transplant. The formula that determines a patient’s degree of kidney function (eGFR)–and consequently their eligibility for transplant–was race based for decades until last year. The result was that fewer African Americans were deemed to be “needing” a transplant even when their creatinine (level of waste products in the blood) was the same as a white patient’s. U.S. transplant centers are now required to adjust the status of African American kidney patients who were wrongly classified based on the old formula.

That was huge news. Overall, most of the nearly 100,000 people waiting for a deceased-donor kidney in the United States wait five to ten years. Thousands die each year simply because they didn’t get one in time. Anything that unnecessarily adds to that wait is tragic.

Remember what I said in the opening about needing more minority donors? Example: In 2021 nearly 30% (28.6) of the total candidates waiting for transplants in this country were non-Hispanic blacks, but black individuals made up just 15% of organ donors in 2021.

Unfortunately, rates for living donation are even more affected. In 2021 only 18.7% of black donors were living donors versus 33.6% of white donors. Given that living donation offers shorter waits and provides better outcomes, lagging in this area further compounds the appalling disadvantages.

Taking concrete steps to reduce inequities in the system is one important way to shorten the wait for a lifesaving organ for those most in need. Raising awareness of the situation–among individuals, healthcare providers, and members of Congress (to provide increased funding for research and supports)–are others.

The NMAG collaborative has numerous print and social media messages on donation and transplantation. Spreading these messages is important this month and every month.

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

My Favorite Activist: Maggie Kuhn

Today (August 3) is the birth date of someone you may not have heard of but who deserves to be remembered and honored: Maggie Kuhn, the engaging founder of the Gray Panthers. Maybe you saw my recent recollection on Medium of my interview with her in the 1970s or recall my blog post here You’re Never Too Old to Be an Activist.

Full disclosure: Maggie Kuhn had nothing to do with kidney donation or protections for living donors–not directly, anyway. But she was a role model for me and should be for anyone who’s ever hesitated to step outside their comfort zone to advocate for something they believe in.

“Speak your mind,” she famously said, “even if your voice shakes.” After having to take mandatory retirement at age 65, Maggie spoke hers at rallies, before boards, and congressional committees as she fought for rights of older Americans and protections for the most vulnerable in society.

I hope you’ll check out the links in this post to learn a bit about Maggie Kuhn and be inspired by her, as I was.

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

UPDATE: How States Rank in Living-Donor Protections

Last year about this time I published a post about living donation-related protections and benefits, by state. As I mentioned then, while awaiting passage of a federal Living Donor Protection Act, more than half of states have enacted their own version (it’s now 31). In fact, like the one we’ve been supporting in North Carolina, some state bills are actually are more generous than the federal version (by including paid leave for state employees who donate).

United States Map With State Names Pdf Valid Printable Map Of | Printable Map Of The United States Pdf – Printable US Maps

But the LDPA is just one way that states can encourage living donation. Financial supports and job protections are other critical ones. I decided to check on the status of those efforts and the resources I provided last year–to include updates and new links as needed.

Are you considering being a living donor, or have you donated recently? Do you know what the relevant tax provisions and protections are in your state–or in a state you may be looking at? It’s worth doing your homework.

The National Kidney Foundation has a terrific resource in a map you can click on to find out what donation-related laws and protections a particular state offers. Does it have a Living Donor Protection Act, or similar insurance-discrimination protections? Does it also have job-protected living donor leave for private employees? How about for state employees? What about paid leave? What about tax deductions? Even better, what about tax credits?

The American Kidney Fund website also features an invaluable resource: a state report card. It rates each state based on important donation-related measures and provides an overall rating on how well that state encourages living donation and removes barriers. Though I’m happy to report there has been some progress in the past year, it’s not nearly enough. Not surprisingly, only a few states still merit an A: Arkansas, Connecticut, and Louisiana. Glad to see that 16 now get Bs, and 14 (plus Washington, DC) have Cs, but several get Ds (including, alas, North Carolina).

Unfortunately, seven states rate an F–that is, these states failed miserably because they have no donation-related measures in place: Alabama, Michigan, Montana, New Hampshire, South Dakota, Tennessee, and Vermont. Earlier this year Nevada and Wyoming passed anti-insurance discrimination laws, moving them up to a D; Rhode Island just passed its version in late June, moving it up to a C. That brings the national average grade to a C, up from D when AKF began the report card system in 2021.

The irony–and real tragedy–is that none of these donation measures is really controversial–they shouldn’t be so damn hard to pull off. They are simple, reasonable, common-sense ways that a state can demonstrate its support for people who help save a life in this way. In fact, not only does encouraging living donation save lives, for kidney patients it reduces costs by reducing the number of people on dialysis (Medicare pays about $90,000 a year per dialysis patient).

With 103,600 people in this country on the national transplant waiting list (about 4 out of 5 needing a kidney), it seems that the very least we can do is remove the barriers to living donation.

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

Word of the Day: “Eplets”

As I wrote last week, I recently was very fortunate to attend two memorable donation-related events in New York City. Between the National Kidney Registry Awards Gala and the National Kidney Donation Organization‘s living kidney donation symposium, I heard fascinating research updates, applauded impressive awards and presentations by dedicated donation advocates, and learned so much.

I met and talked with people I admire and felt an immediate bond with. That held true from the first person I met when I sat down to breakfast at the NKDO symposium, held at the New York City Bar Association–a woman in a Kidney Donor Athletes tee shirt, who said she knew me from this website(!)–to the last person I met, after they’d closed the building and people were lingering outside: a donor/writer who started a nonprofit, Rock1Kidney, and was clearly moved when I talked about being at the Guinness Records gathering of living donors at the Bean.

It always takes time to digest all the new information and remarks, and invariably one or two strong takeaways emerge. This time it was a single word and dramatic new concept for me: eplets. They’re the key to what NKR calls the “Kidney for Life Initiative.”

It turns out that compatibility is way more nuanced than I ever imagined. You may have heard about HLA antigens (you know, the 6-out-of-6 match being the so-called “perfect match”?) . Well, apparently, “matching” antigens may look the same, but they differ by their eplet pattern (think of them as “immunologic hot spots”).

Fair warning: I am not a transplant surgeon, a scientist, or a medical writer, so please do not quote me on this. Rather, use the occasion to go ask someone who is–or, better yet, google Kidney for Life.

Dr. Dorry Segev, NYU Langone transplant surgeon (photo by Carol Offen)

I’d seen the word eplet on charts and even heard it referenced at the NKR Gala presentations. I got the basic gist from the context, but it wasn’t until Dorry Segev, transplant surgeon at NYU Langone, explained it so well at the symposium that I “got it.” From what I understand, it’s time that potential donors and transplant recipients started using the term, as in “Do you test for eplets?”

Yup, Dr. Segev says “everyone should ask” that before a donation/transplant, so be sure to add it to your list of questions. Not all transplant centers do the necessary “high-resolution typing” that can see how many eplets are in the antigens. The number of eplet mismatches can make the difference between a kidney transplant that starts to deteriorate months later, and leads to rejection, and one that can conceivably last “for life,” requiring a lower level of immunosuppressants.

Wow–what a potential game changer! Though “eplets” are new to me, and probably to you, they’re hardly new to transplant professionals, who have been studying this “latest generation in DNA sequencing technology” (per the NKR website) for years. Dr. Segev thinks that within about five years, we’ll all be talking about eplets. I know I will and I hope you will too.

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

A Week to Celebrate!

Last week was quite a memorable one, jam-packed with kidney-donation milestones and special events.

First, on June 27, my husband, son/recipient Paul, and I marked kidneyversary no. 17 with our traditional celebratory dinner out (no, no special cakes–we save those for biggies like nos. 10 and 15).

Next, two days later found me in New York City at—of all places!—the Plaza. The occasion was the lavish National Kidney Registry Awards Gala honoring living donors, with a champagne reception followed by a delicious sit-down dinner in a gorgeous hotel ballroom.

I was one of more than a hundred living donors, plus donation professionals, attending from all over the country. One of the dedicated professionals I got to chat with was Cody Wooley, a very engaging donor coordinator from St. Louis University Nephrology Division. Cody was actually one of the professionals honored, and I was delighted to have my photo taken with her before she received the award.

NKR is the world’s largest paired-exchange (aka “kidney swap”) program. Founder/CEO Garet Hil (a living donor himself) started the nonprofit following his family’s desperate search for a matching kidney for his young daughter in 2007.

Since then NKR has facilitated more than 7,000 living donations.Its goal is to increase and improve living donation while removing all the disincentives to being a donor. Here are just a few of the “what ifs” that NKR has successfully addressed, largely through its Donor Shield protections:

… a family member later needs a kidney at some unknown date? Living donors can receive a voucher for their intended recipient to get a kidney months or even many years later.

… I can’t afford the lost wages and extra childcare costs while I’m recovering? Donor Shield reimburses donors up to $17,000 (up to $12,000 for lost wages and up to $5,000 for travel/lodging and dependent care costs).

—I need a kidney transplant myself one day? Living donors through NKR have priority for a living kidney should they ever need one. (Note: Of the 7,000-plus living donations it’s facilitated, NKR has never had a donor need one.)

In addition to the dinner and the impressive stats, the evening included dramatic video presentations on (and talks by) super-athlete living donors who have done multiple marathons, ultramarathons, and summit climbs. The memorable takeaway, of course, is that donating a kidney does not mean a change in an active lifestyle. Full disclosure: most living donors are more like you or me (a healthy daily walker/zumba fan) than an ultramarathoner–but the point is that those who were runners or swimmers or whatever before donation can certainly continue to exercise their passion (other than contact sports) with just one kidney.

Then, on June 30, I attended the National Kidney Donation Organization‘s living donation symposium. There I learned so much exciting new information about kidney transplants that I’ll cover it in a separate post. Stay tuned!

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

What Country Leads the World in Living Kidney Donation?

I honestly don’t know what I would have guessed if asked which country has the highest rate of living donors. Surely not the United States, with all the financial disincentives—yes, we’re chipping away at them—that still exist.

The answer is Israel, and a recent article in the Forward explains why: largely a result of a dedicated effort spearheaded by a nonprofit group called Matnat Chaim, Hebrew for “gift of life.” Matnat Chaim was founded in 2009 by Rabbi Yeshayahu Heber (a transplant recipient himself, who died years later from covid) and his wife, Rachel.

I’ve long lobbied for and reported here on efforts to support living donation in the United States through the Living Donor Protection Act and other measures. The LDPA is really a very modest step to ensure that life, disability, and long-term care insurance plans can’t discriminate against/penalize living donors; it also would codify the federal regulation that now allows living donors to claim Family and Medical Leave Act protections so they don’t risk losing their job while on leave. Closer than it’s ever been to passage, even this meager legislation has been in the works since 2014!

In contrast, Israel grants one-month paid leave and lower health insurance premiums to living donors—a requirement that began in 2008. If only that were the law here! So many people who can’t afford to take time off work to donate (and may not qualify for financial assistance from the National Living Donor Assistance Center, National Kidney Registry, or other major sources) might be able to consider donation.

Good job, Matnat Chaim! Thanks for setting such a good example. I hope the rest of us can catch up soon.

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

Let’s Stop Spread of Misinformation on Living Donors

Where is Nicholas Kristof when we need him? Every few months or so I come across a nervous comment from a recent living donor in a Facebook living donors group who has been told she (yes, more often than not, living donors are women) has stage 3 kidney disease– despite being healthy and having relatively normal kidney function. It used to make me mad, now it makes me sad. When I saw one again a few days ago, I meant to go back armed with links to some important articles and one of my blog posts, but I never did. So, as usual, I find I need to dust off this topic and post something again. Please read here. But my platform is just a fraction of what a respected journalist/advocate like @NickKristof can employ. Please, Nick, we need you!

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