In 1975, my sister Robin, she was just 19 years old, decided to become a living kidney donor for our brother. A few years later, we decided to backpack through Europe together. She eventually got married, had two adorable children, and even started a successful business. However, the kidney donation took a toll on her health in the long run. At the age of 46 in 2002, Robin was diagnosed with breast cancer. She made the difficult decision to decline chemotherapy out of fear that it could harm her remaining kidney. An MRI had to be stopped due to metal staples from her donor surgery, and she developed hydronephrosis, a condition more common in individuals with only one kidney. A kidney biopsy further deteriorated her renal function, raising the possibility of requiring dialysis.
Not really sure why this matters, but there was a lack of guidance on how to handle cancer as a living organ donor. With decades having passed since her donation, Robin felt hesitant to seek medical advice from her transplant surgeon. Sadly, she succumbed to breast cancer at the age of 51. Robin’s experience is not an isolated case. Nearly one in seven donors encounter adverse events linked to their donation, sometimes emerging many years later. The actual number of cases might be higher than reported because there is limited data on long-term outcomes, and there isn’t much effort to gather it, perpetuating a system that neglects the welfare of living donors.
I’ve been through a similar experience. In 1991, I donated a kidney to my brother before giving birth to two children and experiencing a miscarriage. Those pregnancies were challenging, with spikes in my blood sugar and blood pressure. Diabetes can negatively impact pregnancies and raise the risk of birth defects. Kidney donors are more likely to develop gestational hypertension and preeclampsia. Studies have also shown insulin resistance and decreased levels of insulin-like growth factor in living kidney donors. Later on, an incident during a colonoscopy prep injured my remaining kidney. Additionally, I was denied a breast MRI over concerns that the imaging contrast could harm my solitary kidney.
Maybe it’s just me, but in 2007, I was appointed to the Living Donor Committee of the United Network for Organ Sharing/Organ Procurement and Transplantation Network (UNOS/OPTN). This organization, contracted by the Health Resources and Services Administration (HRSA), oversees the nation’s transplant system. During my time there, I came to realize a troubling fact: the system prioritizes boosting organ supply, creating a conflict of interest that jeopardizes the safety of living donors. Accurate data on donor well-being remains challenging to obtain. As early as 1994, HRSA mandated OPTN to collect donor Social Security numbers (SSNs). By 2003, the American Journal of Transplantation highlighted significant inaccuracies in reported SSNs, with some centers marking donors as “lost to follow-up” yet still receiving credit for data submission. In 2000, while 90% of forms were submitted, 42% of donors were categorized as “lost to follow-up.”
In 2007, Congress passed the Charlie W. Norwood Living Donation Act to encourage more living donor surgeries through paired organ donation and increase revenue for transplant centers. Unfortunately, this legislation exacerbated the issue of inadequate donor data by postponing the focus on donor safety and data collection. The Act simply required the Health and Human Services secretary to send annual reports to Congress on the progress made in understanding the long-term health effects of living organ donation. As of today, little progress has been achieved. The 2025 Progress Report notes the establishment of a donor registry called the Living Donor Collective, but participation from transplant centers is disappointingly low, revealing a lack of commitment to safeguarding the future of living donors.
