ROCKVILLE, Md. (June 23, 2023) – The American Kidney Fund (AKF) applauds Rhode Island for making living organ donor protections state law with HB 5489, signed into law earlier this week by Gov. Dan McKee. The bill, named The Unfair Discrimination Against Organ Donors in Disability Income, Life and Long-Term Care Insurance Act, is now in effect and prohibits insurers from denying life, health, disability and long-term care insurance to individuals solely based on their status as a living organ donor.
The bill was authored and sponsored by state Rep. John (Jay) Edwards. The senate companion bill, SB 1028, was sponsored by state Sens. Melissa Murray, Hanna Gallo, Ryan Pearson, Joshua Miller and Bridget Valverde. AKF delivered letters of support and testimony for the bill in Rhode Island. By enacting HB 5489, Rhode Island becomes the 31st state in the country to pass legislation in recent years that safeguards living organ donors with these vital protections, thanks to AKF's advocacy on this issue.
"Donating an organ to another human being so that they may live is one of the most selfless actions a person can take," said LaVarne A. Burton, AKF President and CEO. "This action should be rewarded and celebrated, not penalized. We thank Rep. Edwards and all those who supported this legislation for leading the charge to reduce barriers for people who are interested in becoming living organ donors, which may ultimately help save the lives of Rhode Islanders who are waiting for an organ transplant."
Increasing living donor protections is a critical part of AKF's policy agenda. AKF's State of the States: Living Donor Protection 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. The average grade for the U.S. is a C. With Rhode Island's HB 5489 signed into law, its grade improves from a D to a C.
Most transplanted organs are from deceased donors, but patients may also receive organs from living donors. Living donation offers an alternative for individuals awaiting transplantation from a deceased donor and increases the existing organ supply. Transplants from living donors generally present fewer complications than deceased donor transplants and living donor organs typically survive longer than deceased donor organs.
There are nearly 104,000 Americans on the organ transplant waiting list and over 90,000 of them, or 87%, are waiting for a kidney. In Rhode Island, 278 people are currently on the kidney transplant waiting list. Of the 26,310 kidney transplants performed in the U.S. in 2022, approximately 1 out of 5 – 5,864 – were made possible by living organ donors. In Rhode Island, 26 of the 57 kidney transplants performed in 2022 were from living donors.
AKF provides long-term financial assistance that makes transplants and post-transplant care possible for low-income dialysis patients. In 2022, AKF grants helped 1,767 people nationwide receive kidney transplants — roughly 7% of all kidney transplants performed in the United States last year. 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.