Yes, I finally made it! I made it all the way to the Capitol earlier this month for in-person meetings.
During a hectic but fun afternoon of training and getting to know my delightful team members (pictured at right), we got tips not only on the legislative “asks,” but also on the fine points of meeting with congressional staffers. In fact, we even heard from two congressional staffers who knew the topics firsthand: one of them had been a National Kidney Foundation advocate himself, another was a recent living donor!
So what were our asks this time? Alas, if they look familiar that’s simply because we’ve been there before with the same critical requests:
1-Co-sponsor the Living Donor Protection Act (you’ve read a lot about this one both here and elsewhere through the years): To end discrimination by insurance companies against living donors just because of having donated a kidney.
2-Co-sponsor the Improving Access to Home Dialysis Act: A much newer piece of legislation, this would make it easier for those who want to do dialysis in their own home (right now only about 15% of people have dialysis at home because it’s not a simple matter–it requires training and support). The act would provide lots of in-home support for the first 90 days, among other benefits. This legislation would obviously be a boon for people in rural areas who may live well over an hour’s drive from the nearest dialysis center.
3-Support increases in funding for kidney research, innovation, and early detection. We asked for a substantial increase in funding for the CDC’s Chronic Kidney Disease Initiative plus increases on a par with other important diseases in the National Institutes of Diabetes, Digestive and Kidney Disease (NIDDK). While other major diseases have seen dramatic improvements in recent years, kidney disease outcomes, on the contrary, have gotten worse.
Last week I had a day of back-to-back virtual meetings with congressional staffers–plus one congressman!–to talk about the Living Donor Protection Act and kidney health in general. Hard for me to believe that this was my fifth such event. Unlike most of the others I’ve been a part of, this one represented a partnership of 22 kidney-health organizations–including the National Kidney Foundation, of course–led by the American Society of Nephrology.
The good news: The LDPA is closer to being passed than at any time since it was first introduced in 2014.
The bad news: With Congress adjourning soon, if it doesn’t make it across the finish line now, we’ll have to start all over in the next session of Congress. (That thought is not only depressing but overwhelming because of logistical issues that I’ll save for another post.) Consequently, our “ask” was not just for cosponsorship of the bill by those members who hadn’t yet signed on but for help from all of them to get the bill to the floor.
As I related here after one such day of meetings, I’ve come to understand what the trainers have told us repeatedly: it’s the personal stories that will stay with and move a staffer or member of Congress. They’ve had a gazillion meetings and heard all the appalling numbers before: that nearly 100,000 Americans are waiting for a kidney and at least 13 die every day because they didn’t get one in time. They know all that on an intellectual level. It’s not the same as hearing what it means for a mother to see her son grow more and more listless and depressed as he struggles through long months of dialysis.
I was joined by an impressive group of fellow advocates who represented an interesting range of perspectives: Brenda Johnson, from the Veterans Transplantation Association, who told of veterans struggling with kidney failure or having to fight with insurance companies to get life insurance if they donate; Lauren Drew, NKF’s very savvy governmental affairs director, who’s been my mentor for such meetings since I first became a Kidney Advocacy Committee member; Dr. Hostensia Beng, a pediatric nephrologist, who shared heartbreaking stories of parents trying desperately to find a kidney donor for their young child; and Dr. Gentzon Hall, a nephrologist/genetics researcher at Duke Medical Center (just down the road from me), whom I’d met last year when we were on the same advocacy team. He emphasized the dire need for more research funding.
The highlight of the day had to be our meeting with Rep. Gregory Murphy, a former transplant surgeon. He knows firsthand how transplant transforms lives, and he promised not only to cosponsor the Living Donor Protection Act but to do all he could to help move it across the finish line before Congress adjourns.
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.
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.
Some of the most dedicated, ardent advocates of living donation I know are neither living donors nor transplant recipients themselves. That’s surely the case for these two contributors–Tammy Wright and Jenine Lewis–to our book, The Insider’s Guide to Living Kidney Donation.
For Tammy, who has helped donor and recipient pairs as a transplant coordinator for nearly 30 years at Sharp Memorial Hospital in San Diego, it’s a profession she deeply loves. For Jenine, who came ever so close to donating one of her own kidneys, it’s a passion and an avocation.
You may think that once someone is approved as a donor, it means smooth sailing ahead and just depends on everyone’s schedule. Alas, that’s not the case for many donors and recipients. Even before COVID came along, life always had a way of throwing complications in people’s paths even when the stakes are frighteningly high.
Example? Recipient gets so sick before the scheduled transplant that it has to be postponed indefinitely. Or donor gets the flu and needs to reschedule. Or an overweight donor learns that he’s prediabetic and has to start an extended period of dieting and nutrition counseling. I could go on.
In Tammy’s book chapter, “Helping Overcome Transplant Obstacles,” she relates several daunting situations she has helped her patients navigate. Many of the creative solutions she draws on were not available when she started out in this profession (or even when I donated in 2006). Paired donation (kidney exchange), notably, often holds the answer to a donation problem, and Tammy’s chapter describes some pioneering efforts.
Tammy movingly relates how she’s worked–and cried–with patients at each new disappointment. Named “Nurse of the Year” at Sharp in 2020, Tammy is as modest as she is private. “I am pretty boring but love what I do and enjoy helping people get transplanted,” she says simply.
When she’s not working, Tammy enjoys being active in Transplant Trekkers, a nonprofit San Diego group dedicated to raising awareness of living organ donation. (She proudly admits also to being a dog lover.)
Like Tammy, Jenine is a San Diegan who does all she can to support living donation, through Transplant Trekkers. Jenine’s book chapter, “How a Would-be Donor Became an Advocate,” relates how she set out determined to donate her kidney to her good friend. After a very long, circuitous route, she finally got the green light for donor surgery in 2016 until…
We’ll let Jenine’s chapter tell what happened and why. Though she was initially heartbroken about not being able to gift her own kidney, Jenine says she soon learned that she could provide valuable help to other potential donors. She’s been an active volunteer in raising awareness of living organ donation in the San Diego area. She often counsels others who have been similarly disappointed and shows them how they can still help their intended recipient.
A youthful grandmother of three, Jenine enjoys hiking, as you can see from the photo. Obviously, Transplant Trekkers, which interestingly raises awareness of living organ donation through virtual, customized hikes, is a perfect fit.
Fun Fact: Transplant Trekkers is the (independent) re-creation of the original WELD (Women Encouraging Living Donation) San Diego group. WELD later teamed up with Donate Life America and added chapters around the country. It now accepts men, so the acronym officially stands for We Encourage Living Donation.)
Diane Brockington, herself a living donor and a tireless champion for living donation, founded WELD in 2015. She now leads the original San Diego group, which renamed itself the Transplant Trekkers.It was Diane who introduced me to WELD and all these impressive women.
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.
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.