A Very Productive Day on Capitol Hill

I just figured out that I’ve now participated in more than thirty advocacy (aka lobbying) meetings for the kidney community, mostly at the federal level. My recent meetings in DC for the National Kidney Foundation’s Kidney Patient Summit definitely stand out. I thought I’d share some observations.

At their worst–perish the thought!–such meetings risk being dry, one-sided recitations of our “asks” (often cosponsoring legislation, signing on to a letter, voting to increase research funding) while a well-meaning but harried staffer listens quietly, taking notes, followed by our rushed awkward efforts to “tell our stories” before the staffer, obviously distracted by more pressing obligations, moves to end the meeting early.

Fortunately, the only ones I’ve ever had that were close to that scenario occurred years ago on Zoom, because of COVID, often without video. (I kept hoping that the disembodied voice was more engaged than it sounded and wishing desperately for a little eye contact to have a better idea if our message was “getting through.”)

At their best, though, such as one our North Carolina team had recently with a seasoned Senate staffer, Garrett Daniel (Senator Thom Tillis’s legislative assistant), they can be exhilarating. Here are a few illustrations.

Instead of being one sided, they’re natural interactive conversations that happily go off script. I’d been in several excellent Zoom meetings with Garrett since 2020, but this was our first in-person meeting. He’s always engaged, well informed, and often alludes to other ideas in the senator’s pipeline–such as a plan for a framework for paid leave for caregivers–that dovetail with our efforts.

LA Garrett Daniel, standing next to name plaque, with our NC team this year (left to right: Alan Levy, me, Wendy Glod, Dre Roundtree, kneeling, and his wife, Necole Roundtree.

We all participated in the lively discussion, often, in response to his questions, mentioning additional aspects of our asks that we hadn’t touched on in our elevator pitch. After hearing comments from a kidney transplant recipient’s wife, Garrett was the one to raise the subject of the burden on the caregiver not just in the home but in terms of job issues.

He listened to our personal stories and then often gently asked questions to get a clearer picture of what our experiences entailed. In fact, when he prompted one of our team members to elaborate on her long journey to get a kidney transplant, she shared important and wrenching details that the rest of us hadn’t heard.

Because her insurance company would only cover her numerous appointments for essential tests if she went to a center three hours each way from her home in Charlotte–instead of one just fifteen minutes away–she had to wait more than two years before she could move ahead with the transplant she desperately needed. Then, after she went through all her testing and was just one test away from being listed for a transplant, she got a peritonitis infection–so the transplant was further delayed.

At the end of the meeting, in addition to concern, Garrett also offered critical pragmatic support. For example, Senator Tillis is already a cosponsor of the Living Donor Protection Act, so our ask in his case was to help us get a committee hearing for the bill. Garrett’s boss is not on one of the committees in question, so Garrett offered to reach out to his counterparts in the office of NC Senator Budd (who is) to bolster our efforts. He planned to do the same with other offices regarding another bill the kidney community is supporting, to help expand access to home dialysis.

It was late afternoon when we left the office, and in between meetings we’d been walking up and down long, imposing corridors and all over Capitol Hill for hours. Our feet hurt. But after meetings like this, everyone on our team left feeling energized.

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.

ASKing Congress–for a “Friend”

My bags are packed, and I’m ready to approach federal legislators and/or their staffers again along with other advocates from the National Kidney Foundation. As usual, we have very important asks.

If you’ve read even a few of my posts since I launched this site in 2019, you know that I’ve been lobbying for the Living Donor Protection Act–both on Capitol Hill and in my state, North Carolina–for several years. So, yes, our number-one ask is for this session of Congress to finally move ahead with this bipartisan (yes!), noncontroversial, bare-bones legislation that’s been kicking around Congress since 2014.

This bill to prohibit discrimination by insurers against living donors–through higher premiums or coverage refusal–gets reintroduced every session. There may be a new sponsor, if one of the originals is no longer in office, more cosponsors…and then it sits. It’s yet to have a committee hearing, much less a vote. This shouldn’t be so hard.

The second ask is a newer one that could benefit so many people currently on dialysis. The majority (about 85%) of dialysis patients receive hemodialysis at a center, where they go three times a week for three to four hour sessions. Not everyone lives near a center and may need to travel more than an hour by car or city bus(es) to get there. We want Congress to improve access to home dialysis for patients who choose to do it, by providing funds for training and professionals to actually go to people’s homes in the first few months to help them learn how. It could be a game changer by enabling someone to do dialysis on their own schedule and even facilitate their being able to fit sessions around their work hours.

The third ask is about modernizing and improving the national transplant system that allocates deceased organs. Nearly 100,000 people are on national waiting lists (most of them for a kidney), and most wait several years. The system is extraordinarily complex and there are appalling instances of wasted organs. Most everyone agrees it needs to be more efficient and transparent, so more people can get a transplant after a shorter wait. Congress passed an act to modernize and improve the system last year. What we need now is for lawmakers to provide the necessary $100 million funding to carry it out.

The fourth ask, and in the long run arguably the one with the most lasting potential benefit, concerns early screening for kidney disease. My symbolic “friend” in the kidney community probably isn’t even aware of being among the estimated 37 million Americans with chronic kidney disease. Yup, 90% of that population haven’t even been diagnosed yet and don’t know that their kidneys are gradually–sometimes not so gradually–losing function.

Confused? Let me clarify the difference between chronic kidney disease and kidney failure. Diseased kidneys slowly lose function over years–even decades–before they reach kidney failure, during which time there may well be no obvious symptoms. Once they fail, though, the only way to save someone’s life is with a transplant, or, in the meantime, dialysis. People with diabetes and/or high blood pressure are at the highest risk of developing kidney disease. So if doctors routinely screened these patients for kidney disease (with a simple blood test), millions of lives could be saved.

With early detection, not only can that disease progression be slowed, it can often even be reversed, through behavioral changes–exercise, healthy diet, hydration–and medication. We’re asking members of Congress to sign a letter in support of official guidelines for screening.

These are pretty straightforward noncontroversial asks. I’ll let you know how it goes.

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.

“Ms. Smith” Goes Back to Washington

Last year at this time I excitedly announced here that I’d be going to Capitol Hill–in person!–for legislative meetings as part of the National Kidney Foundation’s Kidney Patient Summit. Because of the pandemic, the previous several summits had been virtual–important, productive, yes, but no substitute for the real thing.

I surprised myself by writing that though the logistics of getting from point A to point B, and so on, made me nervous, I realized that the actual meetings didn’t phase me. I explained that multiple trainings and meetings had driven home the message that personal stories of kidney donation and transplant are what make the biggest impression on legislators and their staff.

Last year’s team: Necole & Dre Roundtree, me, Alan Levy.

I’ve been telling mine (about donating my kidney to my adult son) for years to anyone who’ll listen.

This year I’m happy to say I’ll be going back to Capitol Hill for another in-person summit. This time I’ve been invited to also participate in a separate smaller group of advocates for a “series of deep-dive policy discussions” before the summit begins. I’m very excited to be honored with a seat at the table to consider critical issues, such as the status of the nationwide allocation system for deceased-donor organs in the wake of recent reform legislation, obstacles in furthering legislation to improve access to home dialysis, and the increased attention to addressing rare kidney diseases.

Stay tuned for more information.

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

More New Year’s Resolutions

Every year before I make new new year’s resolutions, I try to look back to see how I did on last year’s. Alas, they’re almost always still relevant. I don’t think I’m unusual in that respect. I know that starting next week, for example, my Zumba classes and the workout area of my gym are going to be jammed. I used to be concerned but soon saw that in a matter of weeks, the crowds invariably start to thin, and by late February they’re always back to near-usual levels.

So, I thought I’d dust off my old new year’s resolution blog post and share these again. They’re relevant for everyone–if you’re a donor or never plan to be one.

Whether you’re being evaluated as a living donor already, or just thinking about it, here are a few suggestions that will benefit you and your kidneys–wherever they happen to be.

1- Take good care of yourself (and your kidneys).

–Exercise regularly.

–Get plenty of rest.

–Stay hydrated.

–Eat a healthy diet.

2-For your safety and your future recipient’s, be sure to get the latest Covid booster as soon as you’re eligible. Transplant recipients and anyone else who is immunocompromised, such as people with cancer or autoimmune diseases, can’t count on full protection from the vaccines. It’s all the more important that the rest of us add that protection.

3-Avoid ibuprofen and other NSAIDs—they’re hard on the kidneys for anyone—particularly important if you’re a donor or recipient.

4-Learn about kidney function. Kidneys are amazing!

5-Read up on all facets of kidney donation—for example, order a copy of The Insider’s Guide to Living Kidney Donation.

To all of you and your loved ones: a happy and healthy new year!

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.

Gifting Books about the Greatest Gift?

My tastes in reading have always been pretty varied. I was never much of a history buff, but I discovered a back door through well-written, riveting memoirs and biographies. Similarly, though I don’t have a science background, I’ve learned so much about organ donation and transplantation through authors’ personal and professional experiences. In recent years I’ve enjoyed reading a wide range of social sciences, which have reminded me how much I enjoyed my college psych, philosophy, and sociology courses.

So I thought I’d share here some of my favorite donation-related book titles, in case you’re looking for a holiday gift for someone who has either a personal or professional interest in organ donation–or just a curious mind about a very serious and fascinating public health crisis. To me, these are classics (yes, of course, I’ve included my book) that belong on everybody’s bookshelf (listed alphabetically):

Because of Organ Donation: A Collection of Inspiring Stories Celebrating the Gift of Life–Brenda E. Cortez This poignant anthology looks at organ donation from diverse perspectives: living donors, families of deceased donors, and recipients. I wrote about it in an earlier blog post; the author has since published more donation-related anthologies (learn about her children’s books here).

The Fear Factor: How One Emotion Connects Altruists, Psychopaths, and Everyone In-Between–Abigail Marsh Marsh is a psychologist/neuroscientist with a special interest in altruism. She has done brain studies of nondirected donors and psychopaths. Her very accessible explanations, relatable anecdotes, and fine writing combine to make this a fascinating and memorable read.

The Insider’s Guide to Living Kidney Donation: Everything You Need to Know If You Give (or Get) the Greatest Gift—Carol Offen and Elizabeth Crais. Read what reviewers and readers have to say.

Kidney to Share—Martha Gershun and John D. Lantos. In alternating chapters with Dr. Lantos, a physician and a bioethicist, Gershun vividly and insightfully describes her personal experience of donating. She candidly shares both her gratification as a donor and her frustration in contending with the unimaginable obstacles on her path. Both authors raise thought-provoking points on how the system could and should work better.

When Death Becomes Life: Notes from a Transplant Surgeon–-Joshua D. Mezrich. Dr. Mezrich takes us inside the entire process of transplantation. He movingly describes talking with the families of deceased donors before ever going into the OR. He writes sensitively and evocatively of his experiences with patients and colleagues–for me, the highlight of the book. The first half, on the history of transplantation and the medical breakthroughs, is fascinating reading, though the medical details can be heavy lifting for some readers.

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.

HOLD Act = Aid for More Would-be Donors

If you’ve read any of my blog posts about financial assistance for living donors, you know that one of my pet peeves (boy, is that a euphemism!) is the practice of making aid for donors dependent on their recipient‘s income, as has been the policy through the federal National Living Donor Assistance Center (NLDAC).

So I was delighted to see a bipartisan piece of legislation introduced in Congress last month that would shift the emphasis and could directly lead to more people becoming living organ donors. The Honor Our Living Donors (HOLD) Act (H.R. 6020) would help more donors qualify for reimbursement from NLDAC for lost wages and travel and caregiving expenses–based on the donor’s own financial status. (Fortunately, there are currently other options–see my Resources section–but a federal assistance program needs to be available to everyone.)

As the mother of my recipient, I know both sides of this very special relationship. We were fortunate that I was able to donate to my son. If that had not been possible, I can’t imagine the extra emotional and financial strain that trying to help a donor would have put on our family. The obvious potential for tension and discomfort (for both parties) inherent in this perverse system is not only unfair but also counterproductive. Thousands of lives are lost each year because so many patients’ potential donors decline to donate because of these obstacles.

If you want to help living donors–and thereby kidney patients–please contact your member of Congress now to help build support for this urgently needed bill (HR 6020). And if your representative happens to be either Rep. Jay Obernolte (R-Calif), who introduced the bill, or Rep. Suzan DelBene (D-WA), who cosponsored it–be sure to thank them.

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.

Seeking Input on Kidney Website Content

It’s been more than four years since I launched this kidney donation website. It’s expanded, the numbers of visits and hits have surpassed my wildest dreams—but it still looks the same. Someday I’d really like to give it a fresh look. I’ve learned a lot over the past few years and would love to make it more attractive and functional.

But you know what, I feel the same way about our backyard, and, despite my best intentions, it still hasn’t happened.

The website won’t take quite as much work—or, fortunately, money—but I know it’s not going to happen anytime soon. In the meantime, though, I thought I’d look at the content and consider small changes I could make to various elements.

So, I’m going to start with the Resources page and the FAQs. I’d very much appreciate it if you would take a look at both and see if you think I’ve missed something important that would benefit would-be living donors or others visiting the site. Or, for that matter, if you think I should consider replacing any of the FAQs or organizations on the resources list.

Please send me your suggestions! (And if you have any tips on low-maintenance, inexpensive things I can do for our backyard…)

Many thanks!

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.

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.