The Time Has Come to Modify NOTA by Ned Brooks
This talk was delivered at the NKDO National Kidney Donor Symposium
NYC New York, June 30th, 2023
In 2015, I donated my kidney to a stranger, who turned out to be a young mother of two children. Since then, I had been convinced that if we spread enough awareness about the extent of the kidney crisis in this country, that we could solve the problem through volunteers like myself. I was wrong, and I want to tell you why.
In the United States, there are more people with End Stage Kidney Disease, ESKD, than can fit in the five largest NFL stadiums combined. ESKD occurs when your kidneys fail to properly filter your blood. If that happens
you either - die, - get a kidney transplant, - or go on dialysis until you die or get a transplant. Dialysis is a process where you typically go to a clinic three times a week for four hours per day, to have your blood cleaned by a large machine. A dialysis center is a temple of despair.
After donating, I started a not-for-profit called National Kidney Donation Organization. We have over 50 living donors who are trained as mentors to folks who are interested in becoming donors. This year our mentors will reach out to over 20,000 prospective donors. Our work with these candidates is resulting in an almost 300% increase in those who persevere to become donors. Sounds pretty good, right?
Well, let’s see what kind of impact we’ve had on the big picture: In the U.S. there are about 557,000 people on dialysis.
In 2015, the number of living donors was about 6,000 per year. With all the work that we and other organizations have done over the past seven years to promote living donation, the number of living donors is still about 6,000.
I mentioned that the National Kidney Donation Organization will speak with over 20,000 donor candidates. That will distill down to less than 600 donors this year.
Asking someone to consider donating an organ is a tricky business – it doesn’t work unless they are already inclined to be a donor. Believe me, I’ve tried.
There is also a limit to deceased donations. When people think of the kidney shortage, they immediately think -- 1) I'm a registered organ donor so I'm doing my part, and 2)
we should just focus on getting more registered organ donors.
Here's the rub: the numbers don’t work. Why?
To be a deceased organ donor, you have to die in a particular, very rare manner. Even if we maximized our registered organ donation rate from 60% at present to 100%, we would only increase the available deceased donated kidneys by about 12,000, compared to the 500,000 in need of a transplant.
Every life we impact is precious, and I feel really good about what we have accomplished for specific individuals, but the reality is - we are fighting a forest fire with a squirt gun.
The kidney crisis is real, and I believe there is a solution that should be acceptable to most everyone, but before we go there, let’s ask this question – why should you care? For at least two reasons: the first, obviously, is that people are dying unnecessarily. The second is the staggering financial burden of ESKD on the taxpayer.
The head of the National Kidney Foundation testified this past March that Medicare spends an estimated $136 billion, nearly 25% of Medicare expenditures, on the care of people with a kidney disease diagnosis. Of that, $136 billion, $50 billion is spent on people with ESKD. Every transplanted patient who is taken off dialysis saves society $1.6 million. Ladies and gentlemen, we've run out of options. The supply is nowhere near the demand for kidneys and the gap between the two is widening by the minute. With billions of dollars on the line and hundreds of thousands of lives at stake... we need a bold proposal. Indulge me for a moment, why not pay people to donate a kidney?
The ethical concerns are straightforward – we don’t want to take advantage of people who may be in desperate financial straits to do something that they would not have done otherwise. But consider - we currently pay for plasma, bone marrow, hair, sperm, eggs, and…. surrogate pregnancies – yet the National Organ Transplant Act of 1984, which was about the year when living donation became a thing, prohibits compensating organ donors.
The challenge, everyone agrees, is creating a compensation model that does not exploit the donors. I ask that you keep that word “exploit” in your mind for a minute.
Another way to think about this - as one bioethicist points out, “Every person in the chain of living
organ donation, except one, profits.” The hospital gets paid, the doctors and nurses get paid, pharma gets paid, the recipient is the main beneficiary – when you’ve been thinking about this for a while it can get pretty bizarre – what other human endeavor do you know where a commodity passes through a chain of transactions, and everyone in that chain benefits except for the supplier of the commodity? Talk about exploitation!
Folks, there is a better way. We can quibble about the right amount, but I suggest that a $100,000 payment for each donor will eliminate the waitlist pretty quickly. Here’s how:
That $100,000 is in the form of a refundable federal tax credit. The tax credit will be uniformly applied over a period of 10 years in the amount of $10,000 per year.
Opportunistic on the part of the donor? - Certainly. Exploitative? – That would be a reach.
What I am proposing here is but one of many possible ways to safely and ethically incentivize people to become living donors. For me, the tax credit is the best of what I have seen so far.
A quick comment about the risk of donation – we don’t have time to recite all the statistics about how safe living donation is, but “risk” factors in the way everyone thinks of this. The single biggest concern of every living donor is, “What happens if I lose the function of my remaining kidney?” The National Kidney Registry has been facilitating transplants since 2008, with over 7,000 transplants to date. They prioritize a living kidney transplant if a donor loses function in the remaining kidney. How many times in those 7,000+ transplants since 2008 has the NKR given a living donor a replacement kidney? ……..Zero. There has been, elsewhere, the very rare case where a donor loses function, but so far the NKR has a track record that is 100% in this regard.
We’ve all had episodes of tragedy and loss in our lives, it’s the price we pay for being born. But let’s eliminate unnecessary loss and pain where we have the ability to do so. Slide 14 This system is broken. We need a new idea. We need to have this difficult conversation because tens of thousands of lives are being lost. Let’s figure out how to do this ethically and responsibly.
Going forward I will be working with a team to modify the terms of the National Organ Transplant Act. If you care to do so, please show your support by signing the petition – ModifyNOTA.org. I hope you will follow our progress. Thank you.