AKF Summit: Spotlight on My Fellow Advocates

When surveyed about “the best part” of a kidney summit, I almost always find myself replying “my interactions with other advocates”: meeting new ones, finally meeting in person the individuals whom I knew only online but already considered friends, and of course seeing familiar faces from previous summits and events.

Natalia Brama, far left; Ama Sakyi far right

Bryan McVae, Rep. Fox’s LA, with Madelynn and me

My after-summit posts usually focus on our legislative meetings (such as at the National Kidney Foundation summit in February). At the recent AKF summit in May I was fortunate to meet again with Natalia Brama for North Carolina Senator Ted Budd, and, for the first time, with Bryan McVae, for NC Congresswoman Virginia Fox.

I’ve decided to devote this post to my fellow advocates.

Most attendees at the recent AKF summit, as is typical, were kidney patients or transplant recipients. Individuals who have had a transplant are often moved by their markedly improved health–something no one takes for granted at these gatherings–to want to pay it forward to others in the kidney community. Their personal stories and their perseverance are always inspiring.

And then there are the dedicated family members of transplant recipients. My North Carolina teammate, for example, Madelynn Karathanas, has been advocating for several years (first from California, then North Carolina) on behalf of her adolescent daughter who first became ill at the age of three. Alyssa fortunately received a life-changing transplant 3 years ago.

donors l to r: Callie Gilmore, Beth Burbridge, Elizabeth Kay, me, Brian Martindale, Jamie Galanti

with Elizabeth Kay, living donor and Milwaukee radio show host

The living donors (like me) always happily find one another at such events. It may sound hokey, but living donors tend to feel an instant bond when we meet. At the AKF summit, there were just 6 of us out of 27, a fairly typical ratio. I particularly remember a few of them for having a special impact: Brian Martindale (on my left in group pic), founded a unique organization called Kidneys for Kids; Elizabeth Kay, a Milwaukee radio host, has shared her own story on the air but also featured other inspiring stories of donation/transplant, in an ongoing effort to educate her listeners about kidney donation; and Beth Burbridge (second from left in group pic) has been very active in spreading awareness in Kentucky and was instrumental in efforts to pass the state’s Living Donor Protection Act.

I was happy to meet advocates who don’t have any personal connection to kidney disease but recognize the tremendous need and choose to join the effort. Candace Turner, for example, is a clinical research diversity coordinator at NOWINCLUDED, an agency working to overcome racial disparities in patient care. She’s also an AKF kidney health coach. We surely need more people like Candace to get involved.

with transplant recipient (and old friend) Jim Myers (photo taken at the Feb. NKF summit)

I always leave these gatherings inspired by all the committed advocates and especially admire transplant recipients like Jim Myers, who has overcome so much and even at low points still manages to generate the energy to interview advocates, lobby members of Congress, and advocate through social media. Incidentally, Jim also hosts the Kidney Stories 2 video broadcast, which was the first to interview my co-author and me when our book came out.

Last but not least I want to give a shout-out to the dedicated professionals at AKF who warmly hosted us advocates at the summit. After many zooms and phone calls, it was great to finally meet Ben Shlesinger, AKF’s enthusiastic director of government relations, and associate government relations director Katy Gross, who has been so helpful in answering my many emails. And I was glad I was able to meet and chat with Holly Bode, vice president of government affairs.

Katy Gross, at work at the recent AKF summit

By the way, besides the government affairs staff, the summit included numerous staff from across AKF. Madelynn and I were delighted to be teamed with Ama Sakyi, who works in patient education; this was her first summit. We enjoyed getting to know one another during a long break between meetings. What a terrific idea: introducing everyone to the myriad avenues available to support the kidney community (fyi, donating a kidney is just one of 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.

Paying Living Kidney Donors Could Save Thousands of Lives

I thought I was still on the fence about directly compensating living donors because though I agreed in principle–yes, tweaking a very broken system around the edges hasn’t been working–I still had some hesitations. Isn’t there a risk of it becoming a matter of poor people giving to middle and upper class patients?

But was I really on the fence? Significantly, I’d already signed the mission statement of the Coalition to Modify NOTA (that’s the 1984 law that says living donors can’t be compensated). I agreed with that critical first step. I’d also called my senators asking them to support the End Kidney Deaths Act.

It took a one-hour video interview by “Uncle Jim” Myers with Ned Brooks and Elaine Perlman, the prominent nondirected living donors behind this effort, to dispel my qualms. I’ve met them both at kidney-related events and know that they are knowledgeable, caring, and committed donation advocates. Listening to their well-articulated argument was all I needed.

Interestingly, it’s not that I really learned anything new in that hour. I was obviously predisposed, and they carefully pointed out facts I already knew and showed how those factors reinforce the rightness of the concept.

Surely, if you look at supply and demand, the numbers speak volumes: more than 90,000 people in this country are on waiting lists for a kidney from a deceased donor. Last year a total of about 27,000 kidney transplants (from both living and deceased donors) were performed. In the past 20 years, while the number of living donors has roughly stayed the same, the number of patients on the wait list has doubled. As a result, thousands die each year because they didn’t receive a kidney in time.

Also, tragically, about 12,000 kidney patients are removed from the list each year simply because they became too sick to undergo a transplant. Think of it: If they could have received the kidney sooner, they would have been able to benefit from a lifesaving transplant.

Clearly, the current system isn’t working. In addition to closing the huge gap between supply and demand, living donation is the gold standard for kidney transplants. It shortens an individual’s wait, it works quickly, and typically lasts far longer–on average twice as long as a kidney from a deceased donor.

Creating incentives for people to consider living donation could be a game changer. In the meantime, removing disincentives would seem to be a no-brainer, and that has been the noble goal for decades. Admittedly, there has been some slow progress, mainly in the form of expanding sources of financial assistance and getting closer to passing the Living Donor Protection Act, which prohibits discrimination by insurance companies.

It’s simply not been enough.

If you’re still hesitant to get behind this effort and call your member of Congress, here are a few more compelling points:

1-It would not be an unregulated system with the inherent risks of jeopardizing the health of donors and/or recipients.

The same safeguards that are built into the transplant process at all U.S. transplant centers now would remain in place. That means rigorous physical and psychological testing, including interviews with social workers, and psychologists.

Photo by Nataliya Vaitkevich on Pexels.com

2-The financial incentives would not favor the wealthy over the very poor, who arguably wouldn’t benefit from tax credits. The government would be providing $50,000 (at $10,000 a year for 5 years) in the form of “refundable tax credits,” the type used now to encourage certain types of behavior, such as home-ownership or use of electric vehicles.

People whose income is too low to pay taxes would instead be given a check for $10,000/year.

3-The increased number of donated organs actually would be more likely to benefit lower socioeconomic groups. A disproportionately large chunk of those 90,000 people on the wait lists are minorities and lower-income individuals, who have higher rates of kidney disease. These patients are less likely to have a living donor: their family members often have similar or related health issues that could prevent them from being donors. And healthy friends and family members who might be candidates are more likely to face lost wages or unsupportive work situations.

As a result, the percentage of black kidney transplant recipients who have a living donor is less than half that of white kidney recipients.

4–It won’t cost the healthcare system money–it will actually save tax dollars. Transplants cost the system less than dialysis (at roughly $90,000/year) to begin with. Every patient who stops or avoids dialysis because of a transplant saves Medicare money. So, it not only saves lives–it saves dollars.

Note that the tax credits would go only to nondirected (unspecified) donors, so family members of patients, who would be more likely to consider donating to a loved one anyway, would not be eligible. Down the road, supporters hope to expand the compensation to all living donors.

[For an expanded version of this post (directed particularly to people with less knowledge of kidney donation and kidney disease), see my story in Wise and Well on Medium.com.]

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.

GIFTED: A Novel and Now a Docuseries

As part of National Donate Life Month, I’ve written recently about the public’s preconceived erroneous notions about organ donation–both living and deceased. These myths tragically keep the numbers of donors down and the number of needless deaths up.

More than 100,000 people in this country need a lifesaving organ, for most of them a kidney. Thousands die each year while waiting–or are removed from the list because they have become too sick to benefit from a transplant.

I just read a memorable novel that’s been on my radar for a long time (I remember meeting the author, Robert Horsey, in 2018 at the Living Donor Rally at the Bean in Chicago). The book is drawn from his professional experience as a critical care registered nurse who has served as an organ procurement coordinator. That’s the compassionate individual who coordinates the entire process, making delicate arrangements, and sensitively communicating with the donor’s family and physicians and the organ recipient.

An important and sobering subject, and Horsey’s story is engaging, relatable, moving, and educational.

The novel Gifted was published in 2017, but the topic is timeless. And now, with a docuseries, it’s very timely.

For Gifted: The Docuseries, Horsey has teamed up with award-winning video producers and filmmakers. Their Gifted Productions company was created to educate the general public about organ donation through real people’s stories. The docuseries has five episodes. The team hopes to dispel myths so often reinforced by feature films and popular television series, and, ultimately, to increase the numbers of organ donors.

Episode One follows the inspirational story of the donor family of Heather Miller, who tragically died soon after her graduation from West Virginia University.

A public screening is scheduled for July 2024 at the Transplant Games in Birmingham, Alabama. Gifted has had a few private showings in different states, and more are being scheduled. For information or to donate to its fundraising partner, The Maddog Strong Foundation public 501(c)(3) nonprofit, go to Gifted Productions.

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

Donate Life–In Any Way You Can

As a living donor, I’ve chosen to focus the majority of my posts on the lesser-known subject of living donation (most recently, preconceived notions about donors). I haven’t written much about the other kind of organ donation—that is, after death. It’s one of those sobering subjects that often make people uncomfortable (I used to be one of them).

That said, I’m going to give it a try here anyway and hope that you’ll keep reading. If you’ve read many of my blog posts, you probably have noticed that no matter what I’m writing about, I prefer a light touch and maybe go for a smile or two. So I’m not going to berate anyone who has not already signed up to be a donor. And I promise you I’m not going to drone on about how important it is and how it’s our duty to society yadayadayada.

You already know that, right? (If not, I might note here that more than 100,000 people in this country are waiting for a lifesaving organ—most of them for a kidney—and about 17 people die each day because they didn’t get one in time.)

So what am I going to do here? I’m just going to ask a few simple questions:

1-What percentage of people in this country do you suppose die in a way that even makes it possible for their organs to be donated?

2-If a registered organ donor is dying in a hospital, do you imagine that the doctors and nurses will throw in the towel that much sooner?

3-Are you afraid you might not be “completely dead” when they get ready to recover your organs?

Answers:

Less than 1% (If you’re stunned by that news, you’re not alone. Years ago my guess would have been less than half, but maybe 20% or 30%, but I honestly had no idea.) In other words, the pool is very small.
First of all, they don’t even know—or care—whether you’re a donor or not. Their only concern is saving you, their patient (remember “first, do no harm”?). Secondly, transplant teams don’t get involved until after death is pronounced. In fact, most deceased donors actually come from hospitals that don’t even have transplant centers.
Lots of tests are done—even more than usual–to make absolutely sure that someone is in fact brain dead.

So, if you’ve read this far, thank you! If you weren’t already signed up, I hope this post has given you something to think about and maybe you’ll go to organdonor.gov–or any of a dozen or more sites (don’t wait to renew your driver’s license!)–to register. If you’re already registered, please share this post with others who may not be or who might know someone who would like to share it.

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

Living Donors Are….

If you finished the statement by saying “saints,” then you’re just the reader I’m looking for. I want to dispel that very idea! Please read on.

How about living donors are…”risk takers”? That one too.

You see, so many people have preconceived notions about us living donors, that I think it gets in the way of more people even considering the possibility of doing it themselves.

With nearly 100,000 people waiting years for a deceased-donor kidney, and more than a dozen dying each day while waiting, we clearly need to increase the fairly static number of living donors: roughly 6,000 each year. The first step, as always, is information–we need to give a clearer picture of what living donors are and are not so that people don’t automatically take themselves out of the running. After that, I just want people to have an open mind as they continue to inform themselves about the process.

I’m neither a saint nor a risk taker, and most living donors I know (and I know plenty!) aren’t either. And so, in honor of Living Donor Day today (April 3), I’m dusting off a blog post about these myths and a Medium article on this very subject. Hope you’ll check them out and share 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.

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.