Investigating Organ Transplant Waitlist Manipulation in the U.S.

The U.S. organ transplant system is under scrutiny following recent investigations by the Trump administration into state organ procurement organizations. Announced in September 2023, these investigations focus on serious safety concerns, including allegations of attempts to remove organs from terminally ill patients who were still alive. While accountability for such actions is essential, the attention to these rare instances may overshadow a more pervasive issue affecting fairness and equity within the transplant system.

Since the introduction of a new allocation system in 2018, practices that could be defined as “gaming” the system have emerged. The new framework, developed by the nonprofit organization United Network for Organ Sharing (UNOS), replaced a previous three-tier system with a six-tier classification aimed at better assessing patient urgency for heart transplants. This change was intended to prioritize the sickest patients, expediting their access to life-saving transplants.

However, evidence suggests that the system has inadvertently incentivized manipulative practices. For instance, some patients have undergone invasive treatments that may not have been medically necessary, solely to elevate their status on the waitlist. Moreover, a rise in “exception requests”—applications aimed at boosting transplant status—has been noted despite the stringent rules designed to curb such exploitation.

The core of the problem lies in how disease severity is evaluated. Under the current system, the criteria for determining a patient’s urgency is heavily influenced by the treatments they receive. Patients undergoing more aggressive interventions, such as surgically implanted heart pumps, are placed in higher tiers, while those treated with medications alone find themselves at a disadvantage.

Research published in Transplantation Direct highlighted a significant increase in the use of intra-aortic balloon pumps among waitlisted patients, which surged from just 3% in 2017 to 45% post-2018. This rise is not reflective of a corresponding increase in patient severity, as mortality rates among Tier 2 patients with these devices have been found to be comparable to those treated with medications alone in Tier 3.

The implications of these findings raise critical ethical questions. While the desire of doctors to facilitate quicker transplants for their patients is understandable—given that one-third of patients die waiting for a heart transplant—there is a fine line between legitimate advocacy and potential manipulation of the waitlist. With the limited availability of donor hearts, the elevation of one patient’s status directly impacts another’s opportunity for a transplant.

The problem is exacerbated by the pressure on doctors to increase their center’s transplant volume. More transplants not only translate to additional funding but also enhance the likelihood of improved outcomes, which are monitored by regulatory bodies. This creates an environment where some may feel compelled to engage in treatment escalation to avoid disadvantaging their patients.

To restore fairness in the organ allocation system, several measures need to be considered. A standardization of criteria for exception requests could ensure equitable access for all patients, rather than favoring those at centers with more resources. Currently, approximately 30% of waitlisted patients receive exception status, which significantly boosts their chances of receiving a transplant.

Additionally, there must be scrutiny of the decisions made by regional boards that assess these requests to prevent any potential manipulation of the waitlist. More crucially, the system needs to evolve to evaluate medical urgency independently of the treatments administered. This could involve developing a scoring system based on objective test results, a model that has already proven effective in lung transplants by reducing manipulation.

Despite ongoing efforts by transplant doctors working with UNOS to establish such a system, federal agencies have recently directed a pause in this development. This decision prioritizes resources for investigating rare errors in organ procurement over addressing the broader issue of waitlist gaming, a misstep that risks compromising both safety and equity across the organ transplant landscape.

The challenges posed by the current allocation system warrant urgent attention. As the transplant community grapples with these ethical dilemmas, the focus should shift towards ensuring that every patient receives fair and just access to life-saving transplants.