Investigating Organ Transplant Waitlist Manipulation Practices

Concerns about the integrity of the organ transplant system have intensified following recent investigations launched by the Trump administration. In September 2023, the government began scrutinizing state organ procurement organizations for safety violations, including alarming instances where attempts were made to procure organs from terminally ill patients who were still alive. While these issues warrant thorough examination, the focus should shift to a more pervasive problem undermining fairness and equity in organ allocation.

In 2018, a new rule structure was introduced for heart transplants in the United States, developed by the nonprofit organization United Network for Organ Sharing (UNOS). This new six-tier system replaced an older model that categorized patients into three tiers. The updated system aims to provide a more nuanced assessment of patient health, thereby prioritizing those in greatest need of a transplant. However, since its implementation, practices that could be described as “gaming” the system have emerged, raising ethical concerns.

Patients have reportedly undergone invasive treatments to improve their standing on the transplant waitlist, even if these procedures were not medically justified. The new rules, intended to minimize manipulation, have inadvertently created loopholes that allow for such practices. For instance, the urgency of a patient’s condition is often evaluated based on the treatments they receive, rather than an objective measure of their health status. This means that those undergoing aggressive interventions, like surgically implanted heart pumps, are given higher priority, despite their actual health condition.

A study published in Transplantation Direct highlighted a striking increase in the use of intra-aortic balloon pumps among patients on the waitlist. The use of this device surged from just 3% of candidates in 2017 to 45% after the new rules came into effect. This increase in utilization does not correlate with any genuine rise in patient severity, as the waitlist mortality rates for patients with these devices in Tier 2 were found to be comparable to those receiving medication alone in Tier 3.

These findings suggest that the current organ allocation system incentivizes unnecessary invasive treatments, as physicians may feel pressured to escalate care to elevate their patients’ waitlist status. With one-third of patients dying while waiting for a heart transplant, the urgency to act is understandable, but the ethics of manipulating the waitlist for one patient inevitably disadvantages another.

The widespread treatment escalation raises significant ethical dilemmas. Some physicians acknowledge feeling compelled to participate in these practices to ensure their patients are not left behind. Moreover, the financial implications for transplant centers are considerable; more transplants can lead to increased revenue and enhanced performance metrics that are closely monitored by regulatory bodies.

As the transplant community grapples with these ethical challenges, restoring fairness in the organ allocation system is imperative. One proposed solution is to standardize the criteria for exception requests, which currently apply to about 30% of waitlisted patients, giving them a significantly better chance of receiving a transplant. Scrutiny of the regional boards responsible for reviewing these requests is also critical to prevent further manipulation.

Crucially, the transplant community needs a system that assesses medical urgency based on objective test results rather than the interventions chosen by doctors. The development of a scoring system, similar to one used for lung transplants, has shown promise in reducing manipulation. Yet, federal agencies have paused efforts to advance such a score, diverting resources to investigate isolated procurement issues instead.

This decision could prove detrimental. The potential for waitlist gaming poses a more serious threat to the safety and equity of the organ transplant system, impacting a far greater number of lives than the rare procurement mistakes currently under investigation. As Sandeep Jauhar, a cardiologist at Northwell Health, notes, it is essential for the transplant community to address these challenges comprehensively to restore integrity to a system that is vital for so many.