Despite the risks, there is a lack of comprehensive data collection and support for living donors post-donation. This leaves many donors vulnerable to unforeseen health complications, as highlighted by the experiences of my sister and myself.
The story of my sister, Robin, serves as a stark reminder of the lasting impact that living organ donation can have on an individual’s health. Her decision to donate a kidney to our brother in 1975 ultimately led to a series of health challenges later in life, including a battle with breast cancer that ended tragically at the age of 51. The lack of guidance on managing cancer as a living organ donor and the resulting complications she faced underscore the urgent need for improved support and monitoring for living donors.
Similarly, my own experience as a kidney donor in 1991 has been marked by health struggles, including complications during pregnancies and kidney injuries. The lack of access to essential medical procedures and the denial of necessary screenings due to concerns about the lone remaining kidney have further highlighted the gaps in post-donation care for living donors.
The systemic issues within the organ donation system, particularly the focus on increasing organ supply without adequate consideration for donor welfare, have perpetuated the neglect of living donors’ long-term health outcomes. The failure to collect accurate data on donor well-being, as well as the limited commitment to establishing a comprehensive donor registry, further exacerbates the challenges faced by living donors.
Despite the passage of legislation such as the Charlie W. Norwood Living Donation Act and efforts to incentivize living organ donation, the fundamental issue of ensuring the long-term health and well-being of living donors remains unresolved. The emphasis on financial incentives and legal protections for donors overlooks the critical need for ongoing medical monitoring and support for donors post-donation.
As we continue to advocate for the rights and safety of living organ donors, it is essential to prioritize the establishment of comprehensive data collection mechanisms, robust follow-up care protocols, and dedicated resources for monitoring and supporting living donors throughout their lives. Only by addressing these systemic shortcomings can we truly honor the selfless act of living organ donation and safeguard the well-being of those who choose to give the gift of life. Access to Medicare benefits is crucial for individuals in need of consistent and reliable healthcare coverage. Commercial insurance and state Medicaid plans can be unpredictable and inconsistent, leaving many individuals without the necessary resources to access the care they need. 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 modification would not only help overcome research limitations but also override the ongoing resistance of UNOS/OPTN to document the long-term health impacts of living donations.
The Health Resources and Services Administration (HRSA) is taking steps to modernize the Organ Procurement and Transplantation Network (OPTN), with a new board of directors set to assume leadership soon. However, the impact of these reforms, along with recent staffing and budget cuts at the Department of Health and Human Services (HHS), on the care and support of living donors remains uncertain.
Robin, a proud living donor, shared her kidney in hopes of helping her brother. Unfortunately, neither her kidney nor mine could save him, and he tragically passed away after years of dialysis and failed transplants. Throughout his journey, he maintained his emotional depth and intellectual integrity. He would be proud to know that his sisters’ experiences may inspire a future where donor well-being is prioritized, and their life-saving contributions are met with the support and care they deserve.
Jane Zill, a clinical social worker, certified clinical trauma professional, and living kidney donor, has firsthand experience serving on a national committee related to living organ donation. Her expertise and personal experience highlight the importance of prioritizing the well-being of living donors and ensuring they receive the necessary care and support post-donation.
As we navigate the complexities of organ donation and transplantation, it is essential to advocate for policies and practices that support living donors and prioritize their health and well-being. By addressing the gaps in healthcare coverage, collecting high-quality health data, and prioritizing the long-term care of living donors, we can create a more supportive and sustainable system for organ donation and transplantation.
