Gwenyth Mercep ’22

Disqualifying patients with intellectual disabilities (ID) from receiving organ transplantation is an unfortunate reality in healthcare. Compared with the evidence-based criteria used to determine transplant eligibility, the ID model has the potential to be discriminatory and subjective [1]. The use of ID in transplant candidacy may stem from perceived worse adherence and outcomes for patients with ID, concern of penalties to transplant organizations for bad outcomes, and stigma surrounding the presumed quality of life for people with ID [1]. Chen et al examined the benefits and harms of using ID as a transplant eligibility guideline and made recommendations for transplant teams and regulatory agencies to ensure fair access for all patients [1].

The presented benefits were divided into three sections: graft and patient survival, nonadherence, and quality of life [1]. Graft and patient survival are based on the premise that excluding persons with ID from transplantation opportunities has been justified by directing organs to individuals who derive the greatest benefit [1]. Yet, studies show insignificant evidence of different outcomes among individuals with and without ID [1]. The available evidence also does not necessarily suggest a higher risk of nonadherence among individuals with ID. Furthermore, metrics for quality of life were not objectively lower just because of an ID [1]. 

Subsequent potential harms included procedural injustice and threat to autonomy [1]. There is a lack of clear guidelines and protocols by professional societies, which results in heightened variability and inconsistent access to transplantation for individuals with ID [1]. To combat this discrepancy, researchers suggest that through education, ensuring adequate social support, creating multidisciplinary teams with shared decision making, instating regional and national-level guidelines, and having review boards, we can promote health equity for a vulnerable population [1]. 

Better data is necessary to understand how frequently ID is used as a contraindication, how ID is evaluated, and the specific supports needed to ensure a successful transplantation [1]. By examining an injustice that is often disregarded, opportunities for a more equitable healthcare landscape are created [1]. 

Citations

[1] A. Chen, et al., Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination. Am J Transplant 20, (2019). DOI: https://doi.org/10.1111/ajt.15755

[2]Image retrieved from: https://pixabay.com/illustrations/person-centred-person-centred-support-3337893/