by Suzanne Ruff, AAKP Board of Directors Member
Within families who battle kidney disease as my family does, there is a time for sorrow and a time for joy, a time for weeping and a time for dancing.
For many of my family members with complete renal failure, organ donation is their only hope. Some because they had been on dialysis for many years, others because they did not want to be on dialysis.
Pre-emptive transplantation (receiving a kidney transplant before dialysis) is recommended more and more. Finding a living donor is strongly encouraged, but it is not easy thing to ask of someone.
On July 10, 2019, President Donald J. Trump signed an Executive Order on Advancing American Kidney Health. The American Association of Kidney Patients (AAKP) has also designated that this is the Decade of the KidneyTM. It is encouraging to know that kidney disease is being actively addressed and innovative solutions are implemented, including the elimination of roadblocks that might make finding a living donor easier. Hope is the quintessential weapon to battle kidney disease. As I read the Executive Order, it gives hope.
One part of the order refers to the issues that greatly concern a potential living donor as they contemplate their decision to donate. Section 8 of the Executive Order reads as follows:
Sec. 8. Supporting Living Organ Donors. Within 90 days of the date of this order, the Secretary shall propose a regulation to remove financial barriers to living organ donation. The regulation should expand the definition of allowable costs that can be reimbursed under the Reimbursement of Travel and Subsistence Expenses Incurred Toward Living Organ Donation program, raise the limit on the income of donors eligible for reimbursement under the program, allow reimbursement for lost-wage expenses, and provide for reimbursement of child-care and elder-care expenses.
We have had five living donors within our family of nine transplants (eight kidney transplants and one liver transplant) among eight different people. I am one of the five living kidney donors.
I did not even consider the costs and hardships that a living donor incurs when my sister collapsed in critical condition from renal failure–a time for weeping. I am from a family that supports one another, both physically, emotionally, and financially when one of us is down and out. In 2004, there were no resources anyway. It’s been sixteen years since I became a living donor and my sister is healthy, happy, and thriving–a time for dancing.
Fast forward to 2020. Six very short days ago, as I began to assemble information to write this article, my cousin’s son received a kidney from his cousin, a single mother with a ten-year-old child. Both are recovering and I asked them for their thoughts about the Living Organ Donation Reimbursement Program.
Neither one of them had a clue that there was a program to help living donors!
When I sent the information to my cousin’s son, the recipient, Christopher Burgess, his comment (succinctly given while recuperating) is as follows: “I think there is a flaw still in the law since it takes into account the income of the recipients. Donors can feel guilty asking for reimbursement for some costs from a person that is sick so that caveat probably limits possible donors who need support. That said,
I think it’s great to expand the law to care for donors who sacrifice so much. Donors are the best of what America stands for and we should do everything we can to support them and encourage more like them.”
Also recovering is his living donor and cousin, Jenny Hecker. She mentioned her reluctance to ask the donor, who is weak and sick, to fill out financial forms, and, in fact, did not ask, Christopher Burgess, to help pay the costs
she would incur for that reason. She added, “I believe we would see living donor numbers increase if they knew the government would support their loss of wages (beyond paid time off and disability insurance), travel vouchers, and incidental reimbursement. Furthermore, as an only parent to a young child, knowing I had support beyond the kindness of others to help take care of my child while I’m recuperating would be invaluable.”
There were two living donors in our family in 2019. Neither of them probably would have qualified, but they were vague about, or weren’t told, there was any kind of assistance program for living donors.
What if you want to be a donor but you need financial help? Not everyone is blessed to be from a big generous family like mine. What if you want to be an altruistic donor (angels on earth) to someone, but are concerned about the financial aspects of donation? The Living Organ Donation Reimbursement Program is designed to help in those situations.
A donor and the recipient must meet to qualify for the program. Ask your nearest transplant center for info about the program, but remember: all of this has just been expanded so be your own advocate and start here:
https://www.livingdonorassistance.org/How-to- Apply/Eligibility-Guidelines
Becoming a living donor is a very personal and serious decision, not to be taken lightly. There is now hope, though, for those who want to become a living donor but are afraid of the financial burden it would add to their lives. A time for dancing.
Ms. Ruff is a freelance writer for the Charlotte Observer and author of the non-fiction book The Reluctant Donor. The Reluctant Donor was a Finalist in the MIPA book awards and also received the 2015 Illumination book award. She has been published in Chicken Soup for the Soul books. She is a living kidney donor and serves on the executive Board of Directors at AAKP, the Living Donor Council of the National Kidney Foundation, and volunteers for the PKD Foundation. Passionate about kidneys, Suzanne speaks, writes, and volunteers about all aspects of kidney disease, organ donation, and the gift of another day.
Article from aakpRENALIFE November 2020