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The Great Social Experiment — Legislative Update

Updated: May 2, 2023

Why Should Most Living Donors Need to Spend 10% of Their Own Salary to Save a Life?

By Elaine Perlman


Until I made eye contact with two people who would die without getting a new kidney, I did not truly understand the desperation caused by the kidney shortage crisis. This is despite the fact that I had already donated a kidney. I was down in Times Square in the midst of COVID, welcoming donor advocates Lynn and Mark Scotch to New York City as they traversed the country on bicycles to spread awareness for living donation. In that cheering crowd were two men who told me that without a transplant, they didn’t have long to live. I recorded videos of the men’s pleas for a donor that I posted on social media. It was a humbling experience. Their despair hit me hard.

Shortly after meeting those men (both have since been transplanted), I resigned from my position as a professor and program director at Columbia University and joined the National Kidney Foundation’s Community Advocacy Committee and the National Kidney Foundation’s mentoring team. I then accepted a full-time job as the Director of Waitlist Zero, an organization founded by advocates for living kidney donors’ rights, Thomas Kelly and Josh Morrison. In that capacity, I helped pass historic legislation in New York State, the 2022 Living Donor Support Act, that reimburses all of New York’s living donors for their lost wages and out of pocket expenses of living donation. New York is currently the only state that reimburses donors. Most everywhere else donors have to pay to save a life. How insane is that?

Today, most kidney donors bear the cost of travel, dependent care, and lost wages to save a life. Why should living donors shoulder that cost? Do surgeons or firefighters go into debt as they save lives? They do not. Yet currently, the typical living donor is spending around 10% of their annual income to become a life saver. This is a clear disincentive to donation. We cannot measure how many willing donors looked at the costs and decided not to make the sacrifice to save a life because of money. Adding salt to the wound, this barrier is costing the taxpayers money.

Kidney dialysis costs taxpayers $50 billion a year; that’s 1% of the entire federal budget (the Department of Education is between 2-3%). On average, when an American receives a kidney transplant and ends dialysis, the taxpayer saves $50k per year per patient. As a country, it makes financial and humanitarian sense to make sure that donors are not financially burdened for a selfless act that involves considerable time and the pain of surgery.

Though we can celebrate that New Yorkers who donate to other New Yorkers are now protected from the financial harm of donation, what about living donors in our other 49 states? The federal government does have a reimbursement program for donors. Unfortunately, that program, the National Living Donor Assistance Center (NLDAC), is so restrictive that only 19% of donors qualify. Why? Because both the donor and recipient need to earn less than $51,000 as individuals in order to qualify. NLDAC’s maximum allowable reimbursement is $6,000 and many donors pay far more than that, especially if they live in rural areas far from transplant centers. Check out this video to see how much living donation can cost donors.

As a first step, Waitlist Zero has written a federal bill called the Honor Our Living Donors (HOLD) Act so that we can remove a primary obstacle to donation. The HOLD Act will remove recipient’s income from the equation so that only the donor’s income is examined. Waitlist Zero is also advocating for all donors to be reimbursed, no matter what their income is. Since the federal reimbursement program began in 2007, the maximum reimbursement has remained unchanged at $6,000. Waitlist Zero wants that cap raised to $10,000. Please join Waitlist Zero’s campaign to take the disincentivizing, illogical financial harm out of living donation.

Contact your Representatives in Washington DC and let them know about Waitlist Zero’s life and taxpayer saving HOLD Act. If you wish to help pass the HOLD Act, feel free to email me: Elaine@Waitlist Zero

Elaine Perlman is also a donor mentor with National Kidney Donation Organization, a member of the Community Advocacy Committee with the National Kidney Foundation, and runs multiple donor clubs including the Global One Kidney Club, Vegan One Kidney Club, and NYC One Kidney Club.


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Listening to David Krissman's podcast "The Great Social Experiment" was an education in the history and current crisis caused by the kidney shortage. If you would like to get involved with helping to pass the Honor Our Living Donors (HOLD) Act, please email me at Elaine@WaitlistZero.org

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