Frequently Asked Questions
Note: Relevant resources can be found at the end of the Q & A.
What is the Coalition to Modify NOTA proposing?
The Coalition to Modify NOTA team proposes the passage of the End Kidney Deaths Act, a ten year pilot to provide a $50,000 refundable tax credit over five years to living kidney donors who give kidneys to strangers, those waiting the longest on the kidney waitlist. By the tenth year after the passage of the End Kidney Deaths Act, 60,000 Americans who were dying on the waitlist will instead have healthy kidneys, and we taxpayers will have saved an astronomical $14-$25 billion.
Over half of Americans surveyed support compensating living kidney donors. Each month of delay for the enactment of the End Kidney Deaths Act will lead to 500 American lives lost due to the absence of incentivized strangers’ kidneys. This approach to alleviating the kidney shortage is overdue. We have the momentum to get this bill passed in 2024.
Who are non-directed donors? Around 300 Americans donate kidneys to strangers, people waiting the longest on the kidney waitlist. Non-directed donors often increase the number of donations by launching kidney chains. Living kidneys enhance recipients’ longevity. They are the gold standard of care for patients with kidney failure.
What is the value of a new kidney? Every time someone moves from dialysis to a transplanted kidney, roughly $430,000 is saved by the American taxpayer. The value of a new kidney, in terms of quality of life and future earnings potential, is between $1.1 million and $1.5 million.
What is the American kidney crisis?
Every month, 500 Americans on the waiting list for a kidney transplant die or are removed because they are dying and can no longer be transplanted.
460,000 of the Americans currently with kidney failure crashed onto dialysis in the emergency room, many finding out for the first time that they had kidney disease.
The total number of patients with kidney failure will grow from 550,000 today to one million by 2030.
Why not rely on deceased donor kidneys to end the shortage? A living kidney transplant lasts on average twice as long as a deceased donor kidney. Fewer than 3 in 1000 Americans die in a way that their kidneys can be procured. Currently, the 60% of Americans who are registered as deceased donors provide kidneys for 21,000 Americans annually. Even if 100% of Americans agreed to become organ donors, this would raise donations by only about 12,000 per year. In the USA, 93,000 Americans are on the kidney waitlist. A total of 25,000 people are transplanted annually, two-thirds from deceased donors and one-third from living donors. The size of the waitlist has nearly doubled in the past 20 years, while the number of living donors has not increased.
What is the extra value that non-directed kidney donors provide? Non-directed kidney donors often launch kidney chains that can result in a multitude of Americans receiving kidneys. Fewer than 5% of all living kidney donations are from non-directed kidney donors who are an excellent source of organs for transplantation because they are healthier than the general population.
How much does the taxpayer currently spend on dialysis? The United States government spends nearly $50 billion dollars per year (1% of all $5 trillion collected in annual taxes) to pay for 550,000 Americans to have dialysis, a cost of approximately $100,000 per year per patient, a treatment that is far more expensive than transplantation over the life of a chronic kidney disease patient. Kidney transplantation not only saves lives; it also saves money for the taxpayer.
How many more lives will be saved with the refundable tax credit for non-directed donors? After the End Kidney Deaths Act becomes law, approximately 6,000 non-directed donor kidney donations will save lives annually. That is around 60,000 American lives saved by year ten.
How much tax money will be saved once the End Kidney Deaths Act is passed? The refundable tax credit will greatly increase the number of living donors who generously donate their kidneys to strangers. We estimate that in year ten after the End Kidney Deaths Act is passed, the taxpayers will have saved $14-$25 billion.
What is a refundable tax credit? A refundable tax credit is a credit a taxpyer can get as a refund even if they don't owe any tax.
What do Americans think about compensating living kidney donors? Most Americans favor compensation for living kidney donors to increase donation rates.
Who is able to donate their kidneys? Donation requires potential organ donors to undergo a comprehensive physical and psychological evaluation, and each transplant center has its own rigorous criteria. Only around 5% of those who pursue evaluation actually end up donating, and only about one-third of Americans are healthy enough to be donors. Providing financial incentives will encourage more Americans to donate their kidneys to help those with kidney failure.
Do kidney donors currently have expenses that result from their donation? The medical costs of donation are covered by the recipients' insurance, but donors are responsible for providing for the costs of their own travel, out-of-pocket expenses, and lost wages. Programs like the federal NLDAC and NKR's Donor Shield can help offset these costs, making donation less expensive.
Is it moral to compensate kidney donors? Compensation for kidney donors can be viewed as a way to address the current kidney shortage and save lives. Americans are compensated for various forms of donation such as sperm, eggs, plasma, and surrogacy, all of which involve giving life.
How long do we need to compensate living kidney donors? The End Kidney Deaths Act is a ten year pilot. We favor having compensation continue until a xenotransplant or advanced kidney replacement technology becomes available. In the meantime, it's crucial to prevent further loss of lives due to the shortage.
Will incentivizing donors undermine altruism? Financial compensation for donors can coexist with altruism. Donors can opt out of the funds from the tax credit or choose to donate those funds to charity. 98% of donors surveyed by the NKDO stated that compensation would either not impact or positively impact their decision to donate. Relying solely on altruism has led to preventable deaths.
In addition to ending the kidney shortage, what are other benefits of the End Kidney Deaths Act? The End Kidney Deaths Act can help combat the black market for kidneys and reduce human trafficking because of the increased supply of transplantable kidneys that will cut the desperation underlying transplant tourism.
Another possible benefit is that the End Kidney Deaths Act will motivate individuals to become healthier to pass the highly rigorous donor screening, potentially further saving lives and reducing overall healthcare costs.
Why provide non-directed donors with a refundable tax credit of $50,000? The compensation is designed to attract those who are both healthy and willing to donate. Given the commitment, time, and effort involved in the donation process, this compensation recognizes the value of those who save lives and taxpayer funds.
When more donors step forward, can transplant centers increase the number of surgeries? The Coalition to Modify NOTA was told that transplant centers can ramp up capacity by 10,000 annually. There is considerable unused capacity at most U.S. transplant centers.
In what way does the End Kidney Deaths Act uphold The Declaration of Istanbul? While the End Kidney Deaths Act deviates from one principle of the Declaration of Istanbul by offering compensation, it aligns with the other ten principles and is expected to standardize compensation and reduce worldwide organ trafficking.
What about dialysis as an alternative to transplant? Dialysis, while a treatment option, can be a challenging and uncomfortable process for patients. For these reasons, only about 25% are able to work full-time. For those who could have been transplanted if there were no kidney shortage, dialysis can result in needless suffering and an untimely death.
Why not compensate living liver donors? Liver donation is riskier and not as cost-effective as kidney donation. While the End Kidney Deaths Act currently focuses on kidney donors, it's possible that compensation for liver donors could be considered in the future.
What about the argument that providing an incentive to donate will exploit the donors, especially low income donors?
Primarily middle and low income kidney failure patients are waiting the longest for kidneys. They are far more likely to die due to the kidney shortage. Non-directed donors’ kidneys are donated to the people who have been waiting the longest for kidneys. People with lower incomes tend to have social networks with fewer healthy people because health is related to income level. In addition, being placed on a waitlist often costs money. Kidney donation costs money, an estimated 10% of annual income. The refundable tax credit will help low income donors and recipients the most by making donation affordable and increasing the number of kidneys for those waiting the longest on the waitlist, frequently middle and low income Americans. The tax credit aims to help those most affected by the kidney shortage, as poorer and middle-income individuals often bear the brunt of the kidney crisis’s consequences. The End Kidney Deaths Act will level the playing field, making it easier for those at all income levels to receive a life-saving kidney.
With recent advances in xenotransplantation, is the End Kidney Deaths Act necessary?
The End Kidney Deaths Act will be a bridge program to save the lives of those who will die until a substitute kidney is wide available. For decades, scientists have worked tirelessly to end the kidney shortage by using pig kidneys or high tech solutions. The wide distribution for usage by all who are dying of kidney failure is still years away. In the meantime, 1,000 Americans each month are removed from the kidney waitlist because they either died or became too sick to undergo a transplant surgery. In the next ten years, the End Kidney Deaths will save at least 60,000 of who are dying from the shortage of transplantable kidneys.
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