The high out-of-pocket cost of donating a kidney

“All of your medical and surgical expenses will be paid by your recipient’s insurance,” the nurse coordinator at the Mayo Clinic told me. Naïve, I nodded into the phone at this reassurance. I had already worked with her to have several vials of my blood shipped from my home in Kansas City to Mayo in Rochester, Minnesota, all at no cost to me. Now she was calling to tell me the astounding news: Tests on that blood had revealed I was a perfect match for Deb Porter Gill, a kidney patient I had read about in the newspaper two months before.

“But insurance will not pay for your travel or other non-medical expenses,” the nurse coordinator continued. “There are some sources of assistance we can discuss, but if you don’t qualify, you will have to pay for those yourself.”

I continued to nod. Of course we would pay whatever travel costs we incurred to donate this kidney. I was going to save a life. We could hardly put a price on that.

Five years have now passed since I donated my kidney, and both Deb and I are doing well. I co-authored a book about my experience as an altruistic living kidney donor and have spoken at more than 30 universities, bioethics centers, medical conferences, and transplant clinics. The more I have learned about living kidney donation, the more I have come to question how cavalierly I accepted that I would have to pay actual cash to do that good deed.

My husband and I are comfortable financially. We could afford the $5,000 in gasoline, hotels, and food for the 19 nights we spent travelling to the Mayo Clinic for my medical evaluation, surgery, recovery, and six-month follow-up visit. Our children are grown and our parents are gone, so we had no child care or elder care expenses (though we did have to pay a cat sitter for the time we travelled). And neither of us had to forgo any wages: At 61, I had already retired from paid work, and the generous PTO policy at the nonprofit where my husband was CEO covered the 128 hours of work he missed to travel with me and help with my recovery.

We did not qualify for assistance from the National Living Donor Assistance Center (NLDAC), because my recipient’s income was more than 300% of the current Health and Human Services (HHS) Poverty Guidelines (this has recently been raised to 350%). In fact, my recipient generously insisted on reimbursing us for our out-of-pocket expenses. This is not considered direct compensation for an organ, so is legal under the National Organ Transplant Act (NOTA).

But all of that was just our good fortune. What about potential organ donors without our resources? It is very easy to imagine someone in a low-wage hourly job who wants to donate a kidney to their sister, a married mother of two, who, along with her spouse, has an annual household income slightly above $105,000, which is 350% of the current HHS Poverty Guidelines. That potential donor, unable to access help from NLDAC, would be unable to afford the out-of-pocket expenses or lost wages. There would be no living donation; the patient would remain on the kidney transplant waiting list, along with 93,000 others.

Every living kidney donor saves private insurance or Medicare significant expense — experts estimate between $250,000 and $500,000 over the lifetime cost of dialysis for each kidney patient they help. Every living kidney donor enables the hospital and the surgeons, nephrologists, nurses, and other staff who work there to earn money for their transplant work. But the kidney donor — the one person who gives away a part of their body to make this miracle possible — is forced to incur financial losses to participate.

Recognizing this problem, New York state recently passed the Living Donor Support Act, the first law that provides living organ donors in the United States reimbursement for donation-related expenses, including lost wages, travel, lodging, and child care.

Congress just revised the 1984 law that set up the United Network for Organ Sharing (UNOS) as the sole contract holder to run the country’s organ transplant system. Hopefully, this will have a tremendous impact on the way the system procures, allocates, and distributes organs from deceased donors. A better functioning transplant system, with improved technology and a better process for wait list management, could help living donors, but this legislation does nothing to help living donors overcome the financial barriers to organ donation.

There are currently efforts underway to pass legislation on a federal level that will also address this problem, as well as other barriers to living organ donation. I have been working with the Kidney Transplant Collaborative, a nonprofit organization dedicated to improving America’s transplant system, to promote the federal Living Kidney Donor Support Act to help cover donor costs and increase living kidney donations.

I was deeply honored to give my kidney to Deb. If I had another spare, I would do it again for someone else. But it is time for the government to make that gift financially neutral to the donor. Individuals should not have to pay out of their own pocket to save someone else’s life.

Martha Gershun is a nonprofit consultant, writer, and community volunteer living in Fairway, Kan. Her book “Kidney to Share” (Cornell University Press, 2021), co-authored with John D. Lantos, M.D., chronicles her experience as a living kidney donor.