ROCKVILLE, Md. (Jan. 3, 2022) — The American Kidney Fund (AKF) commends Gov. Kathy Hochul for signing the New York State Living Donor Support Act (SB S1594/A 146A), a groundbreaking law that provides direct reimbursements of up to $10,000 to living organ donors for expenses associated with organ donation not covered by insurance. The bill is the first of its kind enacted in the nation and will help to remove financial barriers faced by potential donors who wish to make a lifesaving gift.
"The New York State Living Donor Support Act sets a nationwide precedent for removing the financial obstacles that are in the way of living organ donors who are considering taking this altruistic action," said LaVarne A. Burton, AKF President and CEO. "In New York, there are currently over 8,000 people on the waiting list for an organ transplant and more than 7,000 (87%) are waiting for a kidney. AKF is grateful to Sen. Gustavo Rivera and Assemblymember Richard Gottfried for working on this bill and their commitment to saving New Yorkers' lives through living organ donation."
New York is the first state to provide direct reimbursements to donors for expenses associated with donation, including lost wages (including demonstrated lost non-employment income) or the economic value of sick or vacation days expended; travel and lodging, child care and elder care expenses; and costs of medications and care associated with the living donation surgery. To qualify for reimbursement, both the organ donor and recipient must be residents of New York state.
"I want to thank Gov. Hochul for signing my bill, 'The New York State Living Donor Support Act,' into law. This will remove financial barriers and educate New Yorkers about living organ donation," Rivera said. "Currently, New York ranks almost last in the country in organ donor registration. We need to support New Yorkers so they're able to give the gift of life. I would also like to express my gratitude to the advocates who fought so hard to make this happen."
"New York faces a severe shortage of organs for transplantation. We should support and protect those who choose to be a living donor by making sure they are covered for health care costs and lost wages," said Gottfried, bill sponsor and Assembly Health Committee chair. "I thank the organ donation advocates, Speaker Heastie, and Senate sponsor Gustavo Rivera for their efforts moving this forward, and Gov. Hochul for signing this bill into law."
According to AKF's Living Donor Protection Report Card, 21 states currently reimburse living donors through tax credits or deductions, which help to remove financial barriers but are not nearly as inclusive as direct reimbursements. Tax reimbursement laws require living organ donors to file a tax return and itemize their deductions, which most taxpayers do not do. Tax credits can be a useful mechanism for those who do itemize their deductions, but direct reimbursements of allowable expenses would benefit every New Yorker, regardless of tax return filing status.
When a living donor donates an organ, the recipient's health insurance typically pays for all of the living donor's medical costs associated with the transplant surgery. However, out-of-pocket expenses, such as the ones covered by the Living Donor Support Act, are not necessarily covered, leaving the donor with a significant financial burden that could dissuade them from donating an organ. Removing such barriers to living donation is sound public policy that will help increase the supply of much needed organs and save the lives of New Yorkers on the organ transplant waiting list.
"It would be a real shame if there was someone willing to be a living kidney donor but would not even get tested because they could not absorb the costs with transplantation," said Dawn P. Edwards, an AKF Ambassador, in written testimony she submitted supporting the bill. "This legislation will honestly save lives because more folks like myself will be able to receive the gift of life, a new kidney."
AKF thanks all those who helped advance the Living Donor Support Act in New York, including AKF ambassadors as well as Donate Life New York State, WaitList Zero, University of Rochester, NYU Langone Health, the Healthcare Association of New York State, the Greater New York Hospital Association and all other allied organizations.
AKF's Report Card measures seven types of legislation states should enact to provide protections for living organ donors and encourage living donations. In the absence of federal legislation to protect living donors, there is an uneven patchwork of protections across the nation, with some states providing no protections at all. With four protections now in place, New York maintains its B grade on the Report Card; the overall grade average for the United States is a C.
While most transplanted organs are from deceased donors, patients may also receive organs from living donors. Transplants from living donors generally have fewer complications than deceased donor transplants and a longer survival of the donor organ.
There are more than 105,000 Americans on the organ transplant waiting list and over 91,000 of them (87%) are waiting for a kidney. Of the 25,490 kidney transplants performed in the U.S. in 2021, just 5,971 (23%) were made possible by living organ donors. In New York, just 545 of 2,028 (27%) kidney transplants performed in 2021 were from living donors.
AKF provides long-term financial assistance that makes transplants and post-transplant care possible for low-income dialysis patients. In 2021, AKF grants helped 1,889 people nationwide receive kidney transplants — 7% of all kidney transplants performed in the United States. AKF's program helps post-transplant patients for their full insurance plan year, ensuring continuity of care.
About the American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.