By Sana S. Baban
At present, there is a population of patients who would physiologically benefit from transplantation but are rejected based on pre-determined non-medical criteria: the presence of psychotic disorders.
An upcoming opportunity for reform provides a chance to rectify this injustice.
The existing organ allocation system has historically marginalized individuals diagnosed with psychotic or affective disorders, such as schizophrenia, schizoaffective disorders, and delusional disorders, labeling them as lower priority or altogether ineligible for transplantation. This exclusion is predicated on the prevailing justification that these conditions inherently lead to poorer post-transplant outcomes due to an inability to comply with complex medical regimens that follow transplantation.
However, the literature on how affective and psychotic disorders influence transplant success demonstrates that these conditions are not accurate predictors of transplant outcomes. Not only is suggesting affective disorders as harmful to transplantation medically and empirically inaccurate, but it also perpetuates a negative stigma towards psychotic disorders and carries detrimental implications to those with such diagnoses.
Starting this year, the United Network of Organ Sharing (UNOS) is being reformed to modernize the system by which organs are allocated in the United States. This seismic change signals the end of a long-standing monopoly on organ allocation that has existed since nearly the inception of organ transplantation.
Under the long-standing system of organ allocation, UNOS has been the sole recipient of the $6.5 million annual contract to run the U.S. Organ Procurement and Transplantation Network (OPTN). They rely upon individual medical centers with transplant departments to determine which patients are added to the UNOS-run national transplant waiting list. These medical centers are responsible for creating their own prioritization system for who should and should not be added to the waitlist. This prioritization system is motivated by criteria aimed at maximizing 1-year post-transplant survival rates, particularly due to pressure from federal regulators. This system includes sensible criteria, including a patient’s ability to accept a transplanted organ successfully. However, it also is accompanied by an unacceptable number of psychosocial exclusion criteria that can deprioritize or entirely restrict organ access. These psychosocial exclusion factors are supposedly implicated in the question of whether the recipient’s quality of life would be enhanced enough to balance out the rigor of the transplant itself and the after-care required. However, no recent empirical evidence suggests that psychotic and affective disorders are associated with higher post-transplant morbidity or mortality.
The reform underway offers a unique opportunity to expand the pool of eligible recipients. The modernization that HRSA (Health Resources and Services Administration) promised effectively ends UNOS’s contract and engages novel algorithms to improve the allocation system as a whole. These proposed changes provide an opportunity to increase the efficiency and equity of the allocation system, offering a more just way of allocating organs that reduces unfair exclusion criteria and weighs multiple patient factors. As we move towards rethinking the way organs are distributed in this country, rectifying the injustice of those unreasonably denied life-saving treatment, whether that be psychotic disorders or intellectual developmental disorders, needs to be at the forefront of consideration.
In its current system, restricting transplant access from individuals with psychotic or affective disorders as their only contraindication is unnecessarily discriminatory. Constructing this exclusion criteria—which lacks evidence-based reasoning—leads to further systemic oppression of those who do not conform to a socially constructed idea of normality. This ultimately perpetuates ableism by denying equal healthcare access, assuming incompetence, and neglecting individual differences of patients who fall under a broad mental health diagnosis.
With more than 100,000 adults and children currently on the transplant waitlist and 6,000 people dying per year waiting for an organ, reform comes at a time when the need for a more effective and efficient allocation system is evident. Advocating for an inclusive and evidence-based approach in organ allocation is crucial to combating ableism and paternalism within the health care system and ensuring equitable access to life-saving treatment for all individuals, regardless of their mental health status. We cannot and should not have to wait another 50 years for an organ allocation system that reflects an equitable and ethical medical field.
Sana S. Baban, MBE, is a Project Manager and Research Assistant at The Hastings Center.
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