Blog post

State legislators who have donated kidneys stand up to protect living donors

Young girl with Kidney Donors Save Lives text

In our work to increase kidney transplants through living organ donation, we have met inspirational allies in state legislatures around the country. In 2019, we worked to introduce legislation to protect living donors in 14 states — and nine of those passed the legislation.

Among the strongest allies for laws that guarantee job-protected leave and end insurance discrimination against living donors are legislators who know first-hand that living donors save lives — because they, themselves, have donated a kidney to someone living with kidney failure.

Three elected officials, from three different states and across party lines, are champions of state legislation that removes common obstacles to living organ donation so that more people can make the lifesaving choice to become a living organ donor.

Rep. Tiffiny Mitchell of Oregon's District 32 wanted to donate a kidney to a close family friend 10 years ago, but she was not a match. Though disappointed she could not donate to her friend, after going through the testing process Mitchell knew she wanted to help another person in need, even if she did not know who the individual was. In May 2019, Mitchell helped pass SB 796, the Oregon Living Donor Protection Act, and just a few months later, in October, her donation of a kidney to a stranger initiated a five-kidney paired donation, or kidney transplant chain, that matched willing but incompatible kidney donors with other patients who also had incompatible donors.

State Rep. Tarah Toohil, representing Pennsylvania's 116th District, has been an advocate for organ donation for many years. Nearly 20 years ago, Toohil gave her mother another chance at life by donating a kidney to get her off dialysis and the prospect of waiting for years on a transplant list. Toohil works passionately to raise awareness of the need for living kidney donation in Pennsylvania and across the country and is the sponsor of HB 924, Pennsylvania's Living Donor Protection Act.

Rep. Deb Conroy of Illinois' 46th District says she did not just save just one life through a lifesaving kidney donation to her ex-husband, but rather she saved five lives — her ex's and those of their four sons. In 2018, Conroy donated a kidney to her ex after knowing for 25 years that he would eventually need a transplant. It was then that she realized not everyone is able to take time off from work to recover as she was. Because of this, Conroy sponsored HB 2847, the Illinois Living Donor Protection Act, working to break down barriers that stand in the way of living kidney donation. The bill was signed into law in August 2019.

These three women are actively working to make their states significantly more hospitable for living organ donors, giving hope to many who are waiting for kidneys and livers, the most common organs transplanted from living donors.

But more needs to be done in 2020 and beyond. The Trump administration has made kidney disease a national priority with the Advancing American Kidney Health initiative, and increasing the number of transplants is one of the highest priorities.

Nearly 100,000 people are on the waiting list for a kidney transplant and for most of them, the wait is measured in years. In this limbo, 13 of them die every day.

Increasing the number of living donors could change that sobering statistic. Kidneys from living donors tend to last longer than those from deceased donors, and recipients generally have better outcomes with living donation. Still, in many states, barriers exist that make living donation harder or do not protect donors from negative consequences.

The significant progress made in the states in 2019 provides a foundation for change and continued progress as we begin the new year.

This year, we will continue working with legislators not only to pass legislation at the state level, but also at the federal level to ensure where a person lives does not impact the possibility of receiving a lifesaving living organ donation. Take action in Congress and your state.

Authors

Melanie Kahn

Melanie Kahn is AKF’s director of state policy and advocacy.