The End Kidney Deaths Act- H.R. 2687
Click Here to learn more about the efforts to get this legislation passed by Waitlist Zero and the Coalition to Modify NOTA, and Join the Team to learn more about how to get involved.
The End Kidney Deaths Act (H.R. 2687/ EKDA) is a ten year pilot program to provide a refundable tax credit of $10,000 each year for five years ($50,000 total) to living kidney donors who donate a kidney to a stranger, which will go to those who have been waiting longest on the kidney waitlist. By the 10th year after the passage of the EKDA, up to 100,000 Americans who had been dying on the waitlist will instead have healthy kidneys, and taxpayers will have saved $10-$37 billion.
While initially qualified to be on the waitlist, 100,000 Americans died due to the long wait times between 2010-2021. In the decade after the passage of the EKDA, up to 100,000 waitlisted Americans will receive a life-saving living kidney transplant that will on average last twice as long as a deceased donor kidney.
The lead sponsor of the National Organ Transplant Act
said 41 years ago in 1984 that if transplant centers conclude efforts to improve voluntary donation are unsuccessful, tax credits should be provided to donors. The EKDA tax credit will provide far more access to lifesaving transplants for the
90,000 Americans currently on the kidney waitlist. For the last 15 years,
50% of those on the waitlist died before receiving a kidney transplant. 800,000 Americans currently suffer from kidney failure; that will likely exceed
one million by 2030.
For the past two decades, 300-400 nondirected donors each year have donated kidneys to strangers. Frequently, kidneys from non-directed donors are used to initiate a chain of kidney transplants for incompatible donor/recipient pairs called kidney chains. This multiplies the positive impact of non-directed donation. The longest chain included
114 recipients. Nondirected donors can also be the “miracle matches” for those who are highly sensitized and unlikely to find a compatible kidney. Non-directed donors do not include people who are donating on behalf of a specific person in a chain or paired exchange.
Kidney transplantation not only saves lives; it also saves money for the U.S. taxpayer. The federal government spends around
$50 billion dollars per year (1% of the $5 trillion collected in annual taxes) to pay for
550,000 Americans to have dialysis therapy. This is a cost of approximately $100,000 per year per patient, a treatment that is far more expensive than transplantation.
Regarding deceased donation, fewer than 1% of deaths occur in a manner (in a hospital on a ventilator) that enables the organs to be recovered. Currently, the
60% of Americans who are registered as deceased donors provide kidneys for about 20,000 Americans annually. If the deceased donation system were working at an optimal level, we could add around
2,000 new kidneys per year, not nearly enough to end the kidney shortage. The key to ending the kidney shortage is to dramatically increase the number of living kidney donors.
Eminent
organizations and
leaders in the transplant community including kidney dialysis patients, recipients and donors support the EKDA.
Congress uses the tax credit system to encourage prosocial behavior. Kidney donation is a generous and brave choice that is time consuming, painful and stressful. It is morally important to pay people for difficult work. Paid heroes like police officers and firefighters engage in difficult work that involves risks to save lives. The choice to not pay kidney donors for their generosity and heroism is arbitrary and resulting in thousands of preventable deaths.
95% of living donors state in surveys that they would donate again because saving a life is emotionally rewarding. Kidney donation is
safer than both childbirth and appendectomies. The majority of American voters believe living donors should be financially incentivized to
increase donation rates. The End Kidney Deaths Act will bring us closer to finally ending the preventable deaths due to the tragic kidney shortage that impacts millions of Americans.
Click here to review the NKDO’s official statement of support for the End Kidney Deaths Act.
Head Here to learn more about the driving force behind this life saving piece of legislation, the Coalition to Modify NOTA.
Honor Our Living Donors (HOLD) Act (H.R. 628/S.967)
Kidney transplantation reduces the federal deficit, and kidney dialysis costs 1% of the federal
budget. 92,000 Americans are suffering on dialysis while waiting for a transplant kidney. If
every American was registered as a deceased donor, we could add 6,000 kidney transplants
each year and still have a tragic kidney shortage. Far more living donors are needed. Living
donors are willing to experience the pain and time loss of donation. We should not expect
donors to sacrifice their families’ finances as well.
Under current regulations, the wages of both
the recipient and donor must be less than 350% of the HHS poverty level. The Honor Our
Living Donors (HOLD) Act would end the practice of factoring in the recipient’s income.
Currently only 19% of living donors qualify for the federal program’s wage, travel and
caregiver reimbursement of up to $6,000. The federal reimbursement program’s funds are
distributed by the National Living Donor Assistance Center (NLDAC), launched in 2007.
The federal Organ Donation and Recovery Improvement Act (ODRIA), 42 U.S.C. 274f
requires means testing of the recipient’s household income.
The original reasoning for
including recipient income is because the recipient may be able to pay for the donors’ costs,
including lost wages, travel and dependent care. In practice, many recipients are not providing
this reimbursement for several reasons, including that often recipients cannot afford the
reimbursement, the donor does not want to ask the recipient for the funds, or people believe
that recipients paying donors is illegal due to the National Organ Transplant Act (NOTA) that
forbids paying donors for their organs.
The number of living donations has declined as the demand for organs has increased.
The expense for the donor is one reason why fewer people are donating. Living donors are
spending more than 10% of their annual income on donations’ costs. The government calls
those who would like to donate but cannot afford the lost wages and costs that accrue during
the testing, surgery and recovery the “invisible donors.” Rural donors are disproportionately
harmed by the financial loss from living donation because they travel greater distances, have
on average lower household incomes, and experience more unpaid work hours.
Between 2006
and 2021, the number of living donors declined by 7%. At the same time, the waitlist for
Americans waiting for a kidney transplant rose 50% from 60,000 to over 90,000. Around 115
people are added to the kidney transplant wait list every day. Due to the long wait times on the
kidney waitlist, each day 12 waitlisted Americans die and 33 are removed because they have
become too sick to be transplanted.
Even though living donors commonly experience emotional and psychological rewards
(95% state they would do it again) from helping save a life, they receive neither health nor
economic benefits.
When Americans step forward to be operated on to donate an organ, the
financial harm can be minimized by passing the HOLD Act so that potential low income
earning living donors will more likely be able to access reimbursement funding rather than
needing to spend their own money when they donate their life saving organ or remove
themselves from the donation process.
Learn more about this piece of legislation by heading Here.
Living Donor Protection Act (H.R. 4583 and 4582)
This bipartisan bill aims to prevent insurance discrimination against living organ donors. It would prohibit life, disability, and long-term care insurance companies from denying coverage or charging higher premiums solely based on an individual’s status as a living donor.
The bill also seeks to include living organ donation as a qualifying event under the Family and Medical Leave Act. This would provide job protections to donors, allowing them to take time off for the surgery and recovery without fear of losing their employment.
Several states have a version of this bill passed to protect their constituents, however a federal version of the bill protecting all Americans has yet to pass.
Learn more about this piece of legislation by heading Here.
