Month: October 2022

Why Is Living Donation So Important?

According to polls, the vast majority (90%) of Americans favor organ donation after death–yet, only about 60% are registered to be organ or tissue donors.

Just curious, what percentage of people in the United States would you guess die in such a way that traditional organ donation is possible? A third? A fifth? Not even close! Less than 1 percent: typically, in a hospital following an accident. So, no, not at home in their beds, not on impact in a car crash, often not even after a slow death from myriad diseases.

That little heart on your driver’s license is just one way to make it known that you want to be a donor. It takes just a minute to register online at many sites.

Traditional organ donation 101: When a dying person has been determined to be brain dead—no activity, no chance of survival—but the heart is still beating, blood is flowing to their internal organs. Once the organ has been removed from the blood supply, the sooner it’s placed in the recipient’s body, the better. With luck it’s off the blood supply for only a few minutes or hours. When it’s necessary to put it on an airplane, that interruption may last several hours—technically, 24 to 36 hours is acceptable, but the sooner it can be hooked up to the recipient’s veins, the better.

So most of the 100,000 people on the national waiting lists may languish several years–5 to 10 is not uncommon–before they receive a lifesaving organ (most of them are waiting for a kidney), and thousands don’t get one in time. Clearly, we need more people to be registered donors.

So, absolutely, register to be an organ and tissue donor (organdonor.gov is one of many sites where you can register in just a couple of minutes), and tell your family of your desire (and then urge them to do the same). But even if everyone complied, we’d still have an organ shortage because of that 99% that can’t be used in traditional donation.

That’s where live donation comes in. Not only does it add to the pool and shorten the wait, it even improves the outcome for most transplant recipients. And we need to remove obstacles for potential donors so that more people will consider being living donors. Tell your representatives–in your state and nationally–to support the Living Donor Protection Act and to increase funds for financial assistance for living donors and for early detection of chronic kidney disease.

An important health crisis as urgent and daunting as an organ shortage deserves more attention, more funding, and a meaningful commitment to finding creative solutions.

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.

Still Advocating After All These Years

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.

It’s soo close. C’mon, LDPA!

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.