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American Focus > Blog > Health and Wellness > Living organ donors need better long-term medical support
Health and Wellness

Living organ donors need better long-term medical support

Last updated: May 23, 2025 2:05 am
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Living organ donors need better long-term medical support
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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.

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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.

See also  Eliminating Waste, Fraud, and Abuse in Medicaid My Administration has been relentlessly committed to rooting out waste, fraud, and abuse in Government programs to preserve and protect them for those who rely most on them. The Medicaid program was designed to be a program to compassionately provide taxpayer dollars to healthcare providers who offer care to the most vulnerable Americans. To keep payments reasonable, billable costs for such care were historically capped at the same level that healthcare providers could receive from Medicare. The State and Federal Governments jointly shared this cost burden to ensure those of lesser means did not go untreated. Under the Biden Administration, States and healthcare providers were permitted to game the system. For example, States "taxed" healthcare providers, but sent the same money back to them in the form of a "Medicaid payment," which automatically unlocked for healthcare providers an additional "burden-sharing" payment from the Federal Government. Through this gimmick, the State could avoid contributing money toward Medicaid services, meaning the State no longer had a reason to be prudent in the amount of reimbursement provided. Instead of paying Medicare rates, many States that utilize these arrangements now pay the same healthcare providers almost three times the Medicare amount, a practice encouraged by the Biden Administration. These State Directed Payments have rapidly accelerated, quadrupling in magnitude over the last 4 years and reaching $110 billion in 2024 alone. This trajectory threatens the Federal Treasury and Medicaid's long-term stability, and the imbalance between Medicaid and Medicare patients threatens to jeopardize access to care for our seniors. I pledged to protect and improve these important Government healthcare programs for those that rely on them. Seniors on Medicare and Medicaid recipients both deserve access to quality care in a system free from the fraud, waste, and abuse, that enriches the unscrupulous and jeopardizes the programs themselves. We will take action to continue to love and cherish the Medicare and Medicaid programs to ensure they are preserved for those who need them most. The Secretary of Health and Human Services shall therefore take appropriate action to eliminate waste, fraud, and abuse in Medicaid, including by ensuring Medicaid payments rates are not higher than Medicare, to the extent permitted by applicable law. This memorandum is not intended to, and does not, create any right or benefit, substantive or procedural, enforceable at law or in equity by any party against the United States, its departments, agencies, or entities, its officers, employees, or agents, or any other person. DONALD J. TRUMP

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.

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