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 Insiderโ€™s Guide to Living Kidney Donation, be sure to explore the rest of my website.

Kidney Swaps and Vouchers and Chains, Oh My!

I was delighted to hear from fellow WELD (Women Encouraging Living Donation) member, Michele Hughes, that her son Dan had just had a successful kidney transplant, at New York-Presbyterian/Weill Cornell Medical Center. Like me, Michele had wanted to donate her kidney to her 20-something son with kidney disease. In their case, though, it wasnโ€™t possible. But this is 2019. So, a few months ago, Michele donated her kidney at Vidant Medical Center in Greenville, North Carolina, to a stranger on Danโ€™s behalf. In return, they received a prized voucher through the National Kidney Registry for a compatible kidney for her son.

A picture of WELD members wearing DONOR tee shirts and holding signs that say "Donate Life." The caption tells where Michele is standing.
Michele is in the front row, third from the left (not counting our littlest WELD member). That’s me, second from the right.

NKR has a huge living-donor pool in the United States; it tries to find the best match for a potential recipient so that if the intended donor isnโ€™t a match for them, they can do a โ€œswapโ€ or even form a kidney chain.

Yes, these amazing options make everything so much easier than it used to be. But anyone whose loved one has had a life-threatening condition knows how stressful and overwhelming navigating the system can be. Fortunately, Micheleโ€™s family was closely supported by a knowledgeable friend whoโ€™s a living donor himself, Ned Brooks.  I recently heard Brooksโ€™s fascinating TED talk, โ€œWhat Makes a Person Decide to Donate His Kidney to a Stranger?โ€

In 2015 Brooks, a retired businessman, decided to donate his โ€œspareโ€ kidney to a stranger to set off a chain of three transplants. Like many of us, he found the living-donation experience so uplifting and life changing that he was determined to spread the word. He went so far as to found a nonprofit, Donor to Donor, to publicize the kidney crisis and to encourage and facilitate living kidney donation. In addition to sharing valuable information and donation stories, the organization matches potential kidney recipients with previous kidney donors/advocates who volunteer to help them find a donor.

Congratulations to Michele and her son. Wishing Dan a smooth recovery.

Donor to Donor will sponsor a (free) one-day Volunteer Kidney Donor Advocates Conference April 24, 2020, in New York City. Details to come.