More than 113,000 people in the U.S. are in need of a lifesaving organ transplant, and every ten minutes someone is added to the national transplant waiting list. Unfortunately, nearly half of all listed candidates will die waiting for a transplant. Research suggests there are approximately 28,000 organs available annually from donors that are not being utilized. Several months ago, President Trump signed an executive order intended to increase utilization of available organs and support living organ donation. In December, HHS announced additional details, including changes to improve accountability and oversight of Organ Procurement Organizations (OPOs). Baylor College of Medicine supports these efforts – firmly believing that more accountability is needed to increase the rate at which organs are recovered and that innovative approaches are crucial to increase the number of living donors. Specifically, we believe there is a need to:
1. Improve oversight of organ procurement organizations (OPOs). 58 OPOs serve as the intermediaries between hospitals and patients/families for organ donation. The Centers for Medicare and Medicaid Services (CMS) reviews each OPO based on self-reported data to ensure compliance. A study from the University of Pennsylvania and others found significant discrepancies in organ recovery rates by OPO, as did HHS based on objective data already held by the Centers for Disease Control (CDC). We support HHS’s proposed new metrics, as does the American Society of Nephrology (ASN), the Global Liver Institute and others. We advocate for OPOs to be held accountable to the highest possible standard as quickly as possible in patients’ interests, and welcome bipartisan oversight from the Senate Finance Committee related to recent reports of “lapses in patient safety, misuse of taxpayer dollars, and tens of thousands of organs going unrecovered or not transplanted.”
2. Support efforts to increase innovation and competition among OPOs. Currently each OPO has a specific, mandated “geographic service area” that effectively operates without competition due to barriers that prevent new entrants from successfully bidding for federal contracts. This lack of competition (among the OPOs and the larger member networks including the Organ Procurement and Transplantation Network (OPTN) as operated by the United Network for Organ Sharing (UNOS)) has thwarted innovation and made them resistant to change. We believe only the best performing OPOs should be surviving, while those underperforming centers are subject to consolidation or closure; and that innovation and competition for functions within the OPTN is critical, which is why we support the HHS Request for Information to support “a modern IT architecture.” This is especially important for encouraging innovation and to ensure that those patients in need of organs in all regions of the U.S. have appropriate access. However, along with these changes, we must put in place regulations or policies to help make sure that unintended consequences (e.g., delays in organ evaluation, support for community hospitals, etc.) are guarded against.
3. Resist imposing unnecessary or expensive burdens on hospitals. Health care professionals also play a gatekeeping role in organ donation. While we support educational efforts to improve communication about organ donation and ensure timely notification of available donors, we oppose additional unfunded administrative or data collection mandates that are incompatible with existing Electronic Health Records (EHR) system requirements (e.g., requiring all hospitals report deaths of all in-patients that are ever placed on a ventilator). At Baylor College of Medicine, we are very involved in researching and recommending ways to improve the usability and safety of health information technology, but until technological challenges associated with EHR compatibility are addressed, we do not believe that mandated hospital reporting requirements is the right answer. What is needed to improve organ donation rates and interventions is more efficient and comparative use of existing data.
4. Encourage and enhance efforts to make donations easier and more desirable to patients and families. Our healthcare providers have a unique lens into all sides of the organ donation and transplant continuum and are acutely aware of the issues and hesitations of existing and potential organ donors, such as mistrust and lack of understanding. We support innovative efforts to increase the living organ donor pool and track the long-term health outcomes of participants. We also believe there are opportunities to leverage technology to better match patients with donors, exemplified by the work we are doing experimenting with AI to improve liver transplant outcomes and the advancements we have made with the HIV Organ Policy Equity (HOPE) Act allowing HIV-positive organ donations to HIV-positive recipients. We support exploring ways to expand the definition of who can donate their organs, especially in those imminently dying, as the understanding of brain death and circulatory death are changing. Finally, we support the recent proposal to extend reimbursable expenses for living donors to include lost wages and childcare costs in an attempt to reduce financial barriers for organ donation.
We believe the efforts outlined above would make meaningful change to our country’s current organ donation policy, reduce organ shortages, and save lives. To our knowledge, we are the only academic institution publicly speaking out about ways to improve organ donation. It is our hope that many others will join us to help instigate and implement real, lasting change in how organ transplants are delivered, defined and experienced in the U.S.
Contributors: Clarice Jacobson, Stephanie Morain, Kevin Erickson, Savitri Fedson, Venkat Ramanathan, Abbas Rana, Nhu Thao Nguyen Galvan, Gabriel Loor, Ronald Cotton, John Goss, SreyRam Kuy, Lindsay Feuerman and Amy McGuire on behalf of the Center for Medical Ethics and Health Policy at Baylor College of Medicine.