Righting Another Race-Based Handicap at Last

Critical wait times on national lists for a kidney–typically several years long–are finally being adjusted to make them more accurate and fair to African Americans. This move is all the more important because black people in the United States are nearly four times as likely as whites to have kidney failure.

I don’t think most people realize that until recently when you got your kidney-function blood test results, the same creatinine reading (level of waste products) was rated differently if you were African American. Let me illustrate with my own test results. A couple of years ago my blood tests showed a creatinine of 0.94 (higher than my usual since my donation but still fine for one kidney). Beneath the 0.94 was my eGFR (“estimated glomerular filtration rate,” or kidney function): 60. The 60 is just on the cusp of normal. Of course, as a white person, I was looking at the line that read “non-African American female.”

If I had looked instead at the next line–African American female–I’d have seen a 70 (completely normal). Note: same level of creatinine.

When the levels are lower, the differences can have serious ramifications for treatment approach because these are the numbers that categorize stage of chronic kidney disease. Ultimately, below 15 denotes kidney failure, meaning an imminent need for either dialysis or kidney transplant.

The eGFR formula had been in place in the United States since the nineties, based on a few characteristics, including muscle mass. Fortunately, in 2021, after the National Kidney Foundation and the American Society of Nephrology got together to look at the use of race in these calculations, their task force announced a new race-free calculation. Now GFR readings differ only by male and female.

Just think about the implications. The point at which someone is put on a transplant wait list, and their priority on that list, is based on numerous factors, including GFR. If patient A is listed with a higher kidney function–that is, seemingly less sick–despite the same creatinine, that naturally affects their wait time.

Now, as of January 5, 2023, in “an unprecedented move to correct racial inequity in access to kidney transplants,” all U.S. transplant centers are required to review their lists to see which black patients were listed based on the old, race-based formula, according to yesterday’s article in USA Today.

“It’s a restorative justice project in medicine,” said Dr. Martha Pavlakis, nephrologist and kidney transplantation committee chair at the Organ Procurement and Transplantation Network, which develops policies for transplant centers.

Given that the overall wait for a kidney is already tragically long (5 to 10 years or more), anything that unfairly misinterprets a patient’s kidney function has life-and-death consequences. These race-based formulas for interpreting kidney function have clearly contributed to the shamefully longer waits for African Americans, who make up about 35 percent of people on the wait lists (but only 13 percent of the U.S. population).

This is huge news for African Americans and for everyone concerned about health care inequities.

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.

Good News and Bad News

If you’re anything like me, you’ll want to read the bad news first. (I’ve never understood why anyone would want to hear good news first, feel terrific, only to then be brought back down and left with sad or depressing news.)

Photo by Miguel u00c1. Padriu00f1u00e1n on Pexels.com

So, first the bad news:

The Living Donor Protection Act, which was first introduced in 2014, still hasn’t crossed the finish line on its way to becoming law. It would provide basic protections against discrimination by insurance companies, as well as job protections for taking time off work to donate. Remember the latest big push during the meetings with lawmakers we had in the fall? We were SO close to finally getting this thing passed. I’m not sure if it’s still technically possible, but it’s as good as impossible. That means we start all over in the next session of Congress. We”ll also need a new House sponsor because Rep. Jaime Herrera Beutler wasn’t reelected.

Now the good news!

Even though it didn’t make it into law, the LDPA had the most cosponsors ever: 158 in the House and 43 in the Senate. That has to translate into increased bipartisan support in the next Congress. In other words, we shouldn’t need to start from scratch. They all know about the act now, and, given that nearly 100,000 people in this country are waiting for a lifesaving kidney, most lawmakers understand its importance.

$$$ for Kidney Disease Awareness and More: Congress just released its final appropriations bill that includes substantial increases in funding for federal programs that promote kidney disease awareness, education, and research. Sure, we need more living donors and must remove obstacles to donation, and yes we need an implantable artificial kidney, but ultimately the best way to meet the critical need for kidneys and save lives by reducing kidney failure, is to PREVENT chronic kidney disease in the first place. So, education and research are absolutely essential.

The Immuno Drug Bill (aka Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act), which finally passed at the end of 2020, goes into effect very soon: January 1, 2023. Believe it or not, this one had been kicking around way longer than the LDPA: 20 years! The kidney community has been fighting to change the law that arbitrarily cuts off Medicare coverage for transplant recipients who don’t otherwise qualify for it–for example, those under 65– after 36 months post transplant. The Immuno bill now ensures that people with no other health plan to pay for their critical antirejection meds will be able to have these drugs covered for the life of the transplant.

Eligible individuals can start applying for the Medicare immuno drug coverage right now. If you have questions, contact the toll-free help line at 855.NKF.CARES (855.653.2273) or nkfcares@kidney.org .

For related posts, resources, and information on my book, The Insider’s Guide to Living Kidney Donation,

please be sure to explore the rest of my website.

Contributor Spotlight: Emotional Challenges of Caregiving

Some people support living donors and transplant recipients not only on a practical basis but emotionally. Two of The Insider’s Guide to Living Kidney Donation‘s contributors are authorities on the subject. One is a licensed professional counselor, Kathleen Fitzgerald, whose clients often include families contending with the emotional fallout of kidney failure, transplant, or any serious chronic illness. The other, Sharon Williams, also has a professional perspective. She is a researcher who specializes in family caregivers for someone with a severe chronic illness.

Contributor Sharon Williams blows out the candles at a recent birthday celebration with family and friends.

Sharon also knows the subject firsthand, because for nearly 20 years she was a caregiver for her spouse while he was dealing with chronic kidney disease, liver disease, and later a transplant. In her chapter of the book, she explains that she eventually realized that her research hadn’t prepared her for the difficult emotional challenges of this kind of caregiving. She shares the valuable lessons she learned along the way. Spoiler alert: it’s wise to let the patient take the lead in planning how to proceed and be ready to support those very personal decisions.

Sharon has since transitioned to phased retirement, working roughly half-time until she retires from her current university position in two years. Today she enjoys spending time with family and friends, including her church family, “a blessing I treasure more and more each day.” Sharon also enjoy walks with her dog and dancing, especially line dancing.

Contributor Kathleen Fitzgerald counsels families facing emotional challenges of a health crisis.

Kathleen’s chapter describes the various ways that families contend with highly charged emotional situations related to health crises. She explains the diverse approaches people try–often unsuccessfully–and then offers helpful case studies of different scenarios, describing why some approaches were beneficial. These different perspectives will resonate with many readers–regardless of whether or not their family member is considering donation or transplant.

It all comes down to the undeniable truth that donation and transplant are far more than medical decisions and experiences. They touch families and friends in profound, multifaceted ways. The ripple effect extends far beyond the individual and even the family unit.

Be sure to read Sharon’s and Kathleen’s complete chapters. If you haven’t already ordered your copy of The Insider’s Guide, you can do so here.

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

National Foundation for Transplants, Trees, and Me

When I launched this website in early 2019, my goal was simple: to raise awareness of living donation by sharing my story of donating to my son, along with timely posts and practical resources to help donors and would-be donors–and anyone interested in supporting people with chronic kidney disease. I threw in a dose of self-deprecating humor because I’ve seen how well it helps information go down.

Photo by Syed Qaarif Andrabi on Pexels.com

I had no sense of how many people I could reach. The website’s following has certainly grown but continues to be a modest audience. And if I don’t spread the word on social media about each new post, far fewer people see it (after all, if a tree falls in the forest and there’s no one there to tweet about it, how in the world does anyone know it fell?).

So, I’m excited, honored (and downright tickled) to announce that the National Foundation for Transplants discovered my blog and wants to amplify the sound of the falling trees–I mean, blog posts!

NFT has asked me to be a guest contributor and run one of my posts once a month on its site. Partnering with such a large, respected organization to spread the word about the importance of living donation–all kinds–is a fantastic opportunity.

An individual donor advocate–particularly a nontech-savvy one like me–can’t hope to make much of an impact alone. Certainly, for government-related aims, having a major, moneyed organization behind you is essential. Being an active kidney advocate for the National Kidney Foundation, and to a lesser extent, a UNOS Ambassador, has been extremely gratifying.

But I’ve also wanted to reach out personally to potential donors because I believe that my story is more relatable than most: I donated to my son, not a stranger; our family had no history of kidney disease; and, maybe this most of all, I’m not an adventurous person, I’m a wimp (I faint at flu shots). And, for goodness sake, I’m no saint or heroine. Most anyone in my situation would have done the same if they could.

I hope that NFT can help me share my perspective and my insights with a wider audience. When you join forces with dedicated, like-minded people and organizations, anything’s possible. Thank you, NFT, for helping this donor advocate amplify her passionate but quiet voice.

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.

Because of Organ Donation

As a living kidney donor, I launched this website primarily to share information about living donation. Because it was my son, Paul, who got my transplanted kidney, I also often write about chronic kidney disease and transplant recipients.

And, because I fervently believe in organ, eye, and tissue donation generally, I sometimes write, too, about the importance of signing up to be an organ donor. Now I want to tell you about a book that includes all these perspectives and more: Because of Organ Donation.

Brenda Cortez has compiled and edited this anthology of 25 moving, first-person stories by donors, recipients, and donor families (that is, family members of deceased donors). Brenda is a living-donor friend/author I’ve written about before concerning her Howl the Owl (it stands for Help Others With Love) children’s books about donation and related topics. She’s helped thousands of kids understand and cope with kidney disease and transplant in their families through her books and in visits to schools and hospitals with little Howl.

Full disclosure: when I began reading Because of Organ Donation, I think I expected that I’d mainly read the donor and recipient chapters and maybe just skim the ones about deceased donation. Instead I read it cover to cover, absorbed and touched by the powerful stories.

I naturally found old friends here from the kidney community, two of whom I’d met at the Guinness Records Living Donor Rally in Chicago in 2018: Brenda herself, who shares her own story of donating to another mom she knew slightly from her daughter’s school; and Kate Griggs, co-founder of the Guinness event, who was shunned by some friends and colleagues for donating to a stranger but still turned living donation into an avocation. (If you ever spot a living donor decal on a car, it was likely a gift from Kate, who’s mailed thousands of them gratis around the world).

The other old friend I found here is Jim Myers, a kidney transplant recipient who, years ago, became a full-time–and a half!–donation advocate (he serves on major kidney organization boards, expertly uses social media, and hosts an interview show (that Betsy and I were on).

I also encountered some of my newer Facebook donor friends, like Deb Kavanaugh (also a Guinness alum!) and Trish Phillips.

I expected to be moved by all these stories, but I didn’t know I would also learn, not only about deceased donation but even living donation (I was stunned that a donor was offered the option of taking back her kidney when her recipient died).

The stories from donor families illustrate clearly how honoring a loved one’s wish to be a donor allows grieving families to take comfort in knowing that he or she was able to dramatically change someone’s life. I was particularly touched by contributors who’d known the unimaginable pain of losing a child and their joy at connecting with their child’s recipient.

Most if not all of the contributors are obviously committed to furthering organ donation and are very active in related organizations and community activities. Because of Organ Donation will surely resonate with readers who share that commitment or have ever been touched by organ donation–but also with many others who can relate to these stories of love, grief, hope, and commitment.

Brenda’s newest book Voices-19 will be out soon. 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.

Kidney Patient Summit: Voices and Faces

As part of the annual National Kidney Foundation Kidney Patient Summit yesterday, I spent most of the day in virtual meetings with congressional staffers for my congressman, Rep. David Price; both senators, Thom Tillis and Richard Burr; and North Carolina representatives Deborah Ross and David Rouzer.

I was very fortunate to be joined by a wonderful group of warm, articulate fellow advocates who helped make the day a gratifying and enjoyable experience: Ashby Andrews, exec director of NC NKF, Marcelo Pena, and Jesse Harris.

Our three main asks were to support the Living Donor Protection Act, which bars insurance discrimination and protects a donor’s job; to facilitate home dialysis for those who want to do it but need professional and logistical support; and increased funding for research, kidney disease awareness, and early detection.

Marcelo and Jesse, who both have chronic kidney disease, shared their stories, particularly their perspective on what facilitating home dialysis can mean in the quality of life of a patient with kidney failure. I shared my story as an unlikely living kidney donor (a self-professed wimp) whose adult son/recipient, Paul, was diagnosed with kidney disease in college—as a result of a strep infection. We had no family history of kidney disease, and he had no risk factors. In other words, as I often point out, what happened to my son, and to our family, can happen to any family.

As always I was so struck by the value of sharing personal stories. When you hear that some 100,000 people have been waiting years for a kidney, it’s hard to digest. Lawmakers and their staff, who were all engaged and open minded in our meetings, are no different. When they hear someone describe what it’s like, both physically and psychologically, to be tethered to a machine for life-sustaining treatments a few hours a day, a few days a week, in a dialysis center–with bright lights and bells regularly going off on machines–the staffers will remember, not the numbers, not the dollars, but the pained look on the person’s face, the catch in his voice.

These are critically important, common-sense, noncontroversial legislative asks. For more information, please go to https://www.kidney.org/advocacy/legislative-priorities

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.

Spotlight on Our Contributors

In the coming weeks, periodically I’ll be introducing a few of the wonderful contributors to our book, The Insider’s Guide to Living Kidney Donation. They candidly and often movingly shared their experiences and their insights with our readers.

I already knew from personal experience and Facebook support groups that relationships both before and well after donation are fraught with complicated emotions that sometimes surface in unexpected ways. In our research Betsy and I noticed that family issues come up repeatedly even when donor and recipient are not related.

Considering its outsize impact on the donation and transplant experience, the subject of family dynamics typically gets insufficient attention. So we decided to devote a whole section of the book to this important topic. Donors and potential donors and recipients alike will be able to relate to many of the contributors’ diverse situations.

You may know that siblings enjoy the best chance of being a so-called “perfect match” (I have to keep remembering that the only true perfect matches are between identical twins): a 1 in 4 chance of matching on 6 out of 6 antigens. Sibling donor-recipient pairs are likely to have a particularly large impact on the whole family plus the extended family.

In the case of contributors Mike Collins and his sister Wendy Withers, the relationship was and remains especially close.

Wendy had had kidney disease most of her life and recalls “not knowing what it felt like to feel good.” She was raising her two young children alone after she and her husband separated when she learned that her kidneys were suddenly failing. Three of her siblings tested and qualified to be her donor, but her big brother Mike aced it: 6 out of 6.

He had a fledgling business and young family in North Carolina, but when the time came he and his wife, Mimi, and kids flew out to Texas so he could donate. They all shared a big farmhouse with two of his sisters and their families–with their parents nearby–while they waited out a series of frustrating delays.

Some 25 years later Wendy feels “great” and enjoys a very full personal and professional life. She remarried and enjoys time with her grandkids. She’s the Town Administrator for Shady Shores, Texas, which is in the midst of a major project, constructing “a fiber backbone that will connect all the government facilities for the four Lake Cities, to be able to offer high-speed Internet to all of our residents. Many areas are currently underserved.”

Mike, whose donor surgery was done back in pre-laparoscopy days (think 12-inch incision), also leads a very full life. He’s healthy and active, enjoying tandem bike rides several times a week with Mimi. His business, aptly named Tandem Translations, has grown. He translates technical materials into English from a jaw-dropping list of languages: German, Russian, French, Italian, Dutch, Spanish, Serbian, and Croatian.

Even though Mike and Wendy still live in different regions of the country, their families spend as much time together as possible. Check out their complete stories in the book.

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.

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. C heck 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:

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).