By Donna Yule, Living Kidney Donor and Kidney Patient Advocate
Marty Durand and I have been friends for well over a decade, so it seemed like a perfectly natural choice to donate a kidney to her when she needed it almost two years ago. Going through the process of matching, preparing and recovering from surgery was life-saving for her and life-changing for me.
When we came through the experience, we both felt strongly that we needed to use our combined life skills and professional backgrounds to make it easier for more people to become living donors. Marty is a lawyer and we were both lobbyists. We have a good understanding of Idaho’s politics and we decided we would do everything we could to advocate for kidney donation.
Idaho is one of only a handful of states that offer a tax credit to a living donor of up to $5000 to cover the costs of travel, meals, and other expenses associated with the surgery. When I had to travel to Seattle once prior to the surgery, and then needed to stay in Seattle for two and a half weeks after the surgery, this tax credit was so helpful. But we knew Idaho could do more legislatively to encourage live kidney donation.
During the 2016 legislative session, we worked with a State Senator to make changes to state law to make Family and Medical Leave Act (FMLA) coverage available to kidney donors. This unpaid leave protects donors’ jobs. After some set-backs, in the summer of 2017, Marty drafted legislation to prohibit insurance carriers from discriminating against living donors in disability, long term care, and life insurance. While not all insurance companies were hiking up the cost of premiums for the donors, or rejecting donors altogether, there were some engaging in that practice and we wanted to prevent it.
State Senator Cherie Buckner-Webb agreed to sponsor the bill on our behalf. She was the perfect person to carry the bill because she is so highly respected by both parties. Marty researched kidney donation and living donors so the Senator would have answers to any possible questions. She spoke to her nephrologist and the National Kidney Foundation, and its Utah/Idaho affiliate to garner support.
As the 2018 session grew closer, we knew we needed to identify where any possible opposition might come from. Senator Bucker-Webb and Marty talked to other Senators and got many to sign on as co-sponsors. The Senator then met with the Director of the Idaho State Department of Insurance, Dean Cameron. He agreed to come to the legislature and speak in favor of the bill. Marty drafted talking points and got letters of support from her nephrologist, the National Kidney Foundation and its Utah/Idaho affiliate. Senator Buckner-Webb, Marty and I all met with an insurance industry lobbyist in the Senator’s office at the start of the legislative session to see if we could get them to support the legislation.
The bill was sent to Committee for a hearing. Marty and the Senator drafted talking points and compiled the letters of support for Committee members. Director Cameron was there, at Senator Bucker-Webb’s request, to answer questions posed by the Committee. Marty and I testified in support of the bill by simply telling our own personal stories. No one testified in opposition.
The vote on the floor of the Senate was 24 in favor and 11 in opposition, so then it was on to the House of Representatives. In the House, Marty, Senator Buckner-Web, and Rep. Sally Toone repeated the process. Once again there was no opposition and the bill passed the House!
Then all we needed was the Governor’s signature. Governor Otter is the Honorary Idaho Chair of the National Kidney Foundation and Senator Buckner-Webb requested an official signing ceremony in the Governor’s office.
The moral of this story is that we can and should change policy to help kidney donors and transplant recipients. There are still more initiatives that Marty and I plan to work on. All it takes is foot work, research and commitment. Legislators are approachable, and many have had experience with organ donation through their own friends and family. Identify friends and possible opposition and meet with them. Get support from other donors and recipients and have them write letters of support, or better yet, meet with legislators. The most impactful thing you can do is to tell your own story. Nobody can tell it better than you!
We must be advocates for ourselves! We stand ready to help anyone in any state who wants to do the same thing. Contact Andrew Fullerton at the National Kidney Foundation if you want to make a difference too!