In 1975, my sister Robin, at 19, became a living kidney donor for our brother. A few years later, we backpacked through Europe. She later married, had two beautiful children, and launched a successful business.
But the donation affected her long-term health. When she was diagnosed with breast cancer at 46 in 2002, Robin declined chemotherapy, fearing it might damage her remaining kidney. An MRI was halted due to metal staples from her donor surgery. She developed hydronephrosis, a condition that is more common in people with one kidney. A subsequent kidney biopsy further impaired her renal function. Dialysis became a possibility.
There was little guidance on how to manage cancer as a living organ donor. It had been decades since her donation, and she didn’t feel she could ask her transplant surgeon for medical advice. In the end, she died of breast cancer at the age of 51.
Her experiences are not unusual. Nearly one in seven donors experience adverse events related to their donation, often surfacing many years after donation. But that might be an undercount. We don’t know exactly how bad the situation is, because there is little data on long-term outcomes and little will to collect it, perpetuating a system that leaves living donors behind.
I’ve lived that experience, too. In 1991, I donated a kidney to my brother before having two children and a miscarriage. Those pregnancies were challenging, including spikes in my blood sugar and blood pressure. Diabetes adversely impacts pregnancy and increases risks of birth defects. Gestational hypertension and preeclampsia are more likely in kidney donors. Several studies have also documented insulin resistance and a decline in levels of insulin-like growth factor in living kidney donors.
Later, a colonoscopy prep injured my remaining kidney. I was also denied a breast MRI for fear that imaging contrast would damage the lone kidney.
In 2007, I was appointed to the Living Donor Committee of the United Network for Organ Sharing/Organ Procurement and Transplantation Network (UNOS/OPTN), contracted by the Health Resources and Services Administration (HRSA) to manage the nation’s transplant system. There, I learned a troubling truth: The system prioritizes increasing organ supply, presenting an inherent conflict of interest that puts living donors at risk.
Accurate data about donor welfare continues to be difficult to come by. In 1994, HRSA required OPTN to collect donor Social Security numbers (SSNs). By 2003, the American Journal of Transplantation reported major inaccuracies in the SSNs reported and noted that centers could report donors as “lost to follow-up” and still receive credit for data submission. In 2000, 90% of forms were submitted; however, 42% of donors were marked as “lost to follow-up.”
In 2007, Congress passed the Charlie W. Norwood Living Donation Act , which was meant to increase the number of living donor surgeries through paired organ donation (and increase revenue for transplant centers.) This legislation exacerbated the donor data problem by deferring addressing donor safety and data collection by simply mandating that the Health and Human Services secretary send annual reports to Congress about “progress made towards understanding the long-term health effects of living organ donation.”
Eighteen years later, little progress has been made. The 2025 Progress Report (covering fiscal year 2023) describes a mechanism to create a donor registry, called the Living Donor Collective. But only four of roughly 250 transplant centers currently participate, demonstrating an abject lack of commitment to safeguarding the future of living donors.
The report acknowledges, “There remains limited national data on long-term health outcomes after living donation.” Even worse, it concedes, “Assuring that the surgeon and other members of the multi-disciplinary transplant team are knowledgeable about the individual risks, benefits, and potential outcomes of living organ donation is difficult.”
In 2022, Norwegian researchers Geir Mjøen and Trond Jenssen highlighted gaps in much of the research about living donors, and concluded, “Current evidence indicates that kidney donors face increased long-term risk of end-stage kidney disease and probably also earlier cardiovascular mortality and all-cause mortality.”
In 2023, UNOS/OPTN acknowledged 1,776 previously unreported living donor deaths since 1994, just 18.5 years post-donation on average. These deaths are not broken down by gender, race, organ donated, or cause, nor even mentioned in the 2025 report to Congress.
While other UNOS/OPTN failures — such as lost organs and manipulated waitlists — have been publicly scrutinized, the negligence in gathering long-term donor data remains overlooked.
Instead, the focus is on encouraging living organ donation through payments, by offering tax incentives, covering donation-related expenses, and enacting laws to ensure donors receive family medical leave and are not denied life, disability, or long-term care insurance. However, there’s no mention of the crucial role of health insurance.
The 1973 Medicare End Stage Renal Disease Program covers complications related to the process of donating a kidney and the care the donor receives while hospitalized. Now it’s understood that reduced organ function demands lifelong follow-up, but Medicare still does not provide funding for long-term donor follow-up.
Living donors face surgical and long-term medical risks due to permanently altered organ function. They need access to Medicare benefits because commercial insurance and state Medicaid plans are unpredictable and inconsistent. And, by adding a “prior donor” modifier to CMS-1500 standardized billing forms used by health care providers, we can ensure the collection of high-quality health data. This would help overcome research limitations and override the ongoing resistance of UNOS/OPTN to document the long-term health impacts of living donations.
HRSA is moving forward with plans to modernize the OPTN, and a new board of directors will soon assume leadership. However, the impact of these reforms, coupled with recent staffing and budget cuts at HHS, on the care and support of living donors remains uncertain.
Robin was proud to be a living donor, though her kidney didn’t help our brother. Neither did mine. He died after three decades of dialysis and three disastrous transplants. Through it all, he maintained emotional depth and intellectual integrity. He would be proud that his sisters’ stories may ultimately inspire a future where donor well-being is prioritized and their “gifts of life” are met with the support and care they deserve.
Jane Zill, L.I.C.S.W., is a clinical social worker, certified clinical trauma professional, and living kidney donor who has served on a national committee related to living organ donation.
