2021 Living Donor Protection Report Card from American Kidney Fund Reveals Where Americans Live Can Affect Their Ability to be Living Organ Donors

States vary greatly in laws that make it easier for people to give the gift of life

ROCKVILLE, Md. (February 8, 2021) — The American Kidney Fund (AKF) today released its first annual  State of the States: Living Donor Protection Report Card, which grades how well laws in each U.S. state and the District of Columbia remove financial and insurance barriers for living organ donors. AKF has been working at the state and federal levels to get such legislation passed; the report card highlights the need for federal legislation establishing a uniform baseline of support for would-be donors, as states are operating with an uneven patchwork of living donor protection laws.

The AKF Living Donor Protection Report Card assigns an A, B, C, D or F grade to all states and the District of Columbia by measuring whether the states have in place seven different categories of legislation including anti-discrimination for life, disability or long-term care insurance; job-protected leave from private employers; job-protected leave from public employers; tax credits for employers who provide paid leave; tax credits or tax deductions for donor expenses; paid leave via Family and Medical Leave Act (FMLA) laws; and extended leave (more than 60 days) via FMLA laws.

Two states — Arkansas and Connecticut — received an A grade, while 27 states received a B or C grade. Twenty-two states received a grade of a D or F, with the national average grade being a D.

About 108,000 Americans are on the organ transplant waiting list, with 95% waiting for an organ that could be provided by a living donor, including the nearly 85% on the list who are waiting for a kidney. Seventeen people die each day waiting for an organ transplant, including 13 who die waiting for a kidney.

Most transplanted organs are from deceased donors, but living donation offers an alternative for individuals awaiting transplantation from a deceased donor and increases the existing organ supply. Kidneys are by far the most common organ transplanted from living donors, followed by livers.

"Awareness of living organ donation has grown in recent years, and many state legislatures have responded by enacting laws that make it easier for people to donate," said LaVarne A. Burton, president and CEO of the American Kidney Fund. "With the AKF Living Donor Protection Report Card, we hope to shine a bright light on the states that are making progress to encourage living donation, and to encourage the federal government to enact policies that remove barriers and encourage living donation. It is not merely a humanitarian gesture — it is good public policy that can save lives."

"AKF's Living Donor Protection Report card is a clarion call for action to support and protect those who choose to make the lifesaving gift of a living organ donation," said Dr. Alan Leichtman, active emeritus professor at the Division of Nephrology of the University of Michigan Department of Medicine. "The uneven patchwork of state protections points up the need for federal protections that would help to make more transplants possible from living organ donors." Dr. Leichtman, a transplant nephrologist and a member of AKF's Medical Advisory Committee, advised AKF in the development of its Living Donor Protection Report Card.

The following are the seven types of legislation in each U.S. state and the District of Columbia that the Living Donor Protection Report Card measured:

Anti-insurance discrimination

Research has shown that people who donate a kidney live just as long as similarly healthy people who have both kidneys. Yet one study found that 25% of living donors who tried to change or initiate life insurance were rejected or charged higher premiums based on their status as an organ donor. In fact, a person may only donate a kidney if he or she is in excellent health.

Only 14 states have anti-insurance discrimination laws in place to prohibit life, disability and long-term care insurers from discriminating against living organ donors by charging them higher premiums or denying them coverage altogether.

Job protection

Job-protected leave ensures that living organ donors will not lose their jobs when they take time off for surgery and recovery. Living organ donors need anywhere from two to 12 weeks of recovery following surgery, depending on the organ and their job requirements, before returning to work. Job protection during recovery time varies by type of employment among the states:

• Thirty-seven states have job-protected leave legislation for public employees. This protects state employees for at least 30 days of either paid or unpaid leave, depending on the state, for organ donations.
• Twelve states mandate certain private employers (based on number of employees) to provide job-protected leave. This legislation requires private employers to provide paid or unpaid leave of varying duration, depending on the state, for organ donation.
• Only one state provides paid leave through Family and Medical Leave Act (FMLA) laws. This state recognizes living organ donation as a serious health condition that qualifies an employee to take paid time off to deal with their own temporary disability or illness.
• Only two states provide enhanced FMLA laws by extending the leave eligibility period beyond 60 days (12 work weeks).

Tax credits and tax deductions

While a transplant recipient's health insurance plan typically covers the medical costs associated with living organ donation, a donor may still be left with additional expenses including travel, lodging, lost wages and medications required after surgery. Many people who are contemplating being a living organ donor worry about the burden of a potential financial loss. Tax deductions and tax credits can help alleviate this risk for donors:

• Twenty states offer tax credits or tax deductions for expenses when donating an organ. These laws provide a tax credit or allow a donor to take a tax deduction from $5,000 - $10,000, depending on the state, to cover the unreimbursed cost of travel, lodging and lost wages for organ donation.
• Additionally, five states offer tax credits for employers who provide paid leave to their employees who become living organ donors. These laws provide a tax credit to the employer of 25%–35%, depending on the state, of the donor's salary during the time of paid leave for organ donation.

Both employees and their employers can incur costs associated with living organ donation. Tax credits to employers are an important incentive to consider providing a period of paid leave, rather than unpaid leave, to employees who become living organ donors. Tax credits or deductions for living donors can help to alleviate some of the out-of-pocket expenses that donors often incur.

"AKF commends the states that have enacted legislation to support living organ donation and ease the barriers of becoming a living donor," Burton noted. "We encourage Congress and the states to continue to pass this important legislation to ensure that all Americans who decide to make the lifesaving gift of organ donations are supported and protected, which will help increase the supply of desperately needed kidneys, reduce transplant wait times and save thousands of lives before it's too late."  

AKF works closely with state legislators on legislation that protects living organ donors and helps remove barriers to living organ donation. In 2019–2020, AKF worked to introduce living donor legislation in 33 states and these laws were enacted in 12 before being delayed in the other states by the COVID-19 pandemic.

Working with its Advocacy Network of 15,000 AKF Ambassadors, AKF actively supported the federal Living Donor Protection Act of 2019 and urges Congress to reintroduce the federal Living Donor Protection Act this year, which would provide a baseline of anti-discrimination by insurers, guarantee that living organ donors nationwide are covered by FMLA, and direct the U.S. Department of Health and Human Services to update its materials on living organ donation to reflect these new protections and encourage more individuals to consider donating an organ.

Additionally, AKF's flagship financial assistance program makes possible an average of more than 100 kidney transplants each month for low-income dialysis patients and continues to help them post-transplant for their full insurance plan year, ensuring continuity of care.
For a complete breakdown of the Living Donor Protection Report Card's results and grading, as well as an opportunity to sign a petition calling for protections for living donors, visit livingdonor.KidneyFund.org.