Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination

Abstract

Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID.

Demonstrating the vital role of physiatry throughout the health care continuum: Lessons learned from impacts of the COVID‐19 pandemic on the disability community

“…Prepandemic, intellectual disability has been used as a contraindication to organ transplantation in the United States. 46,47 During the initial COVID-19 surge, many states developed guidelines on "crisis standards of care," describing the suggested mechanism for allocating critical care resources if need outstripped availability. It was immediately recognized that aspects of these policies would lead to a high risk of discrimination toward people with disabilities.…”

“…Although the coronavirus is novel, care rationing is unfortunately not a new concept to the disability community. Prepandemic, intellectual disability has been used as a contraindication to organ transplantation in the United States 46,47 . During the initial COVID‐19 surge, many states developed guidelines on “crisis standards of care,” describing the suggested mechanism for allocating critical care resources if need outstripped availability.…”

Paulo Martins to serve as an Associate Editor of Artificial Organs

“…He is working on projects to promote social equity and access to transplant for disadvantaged populations. 7 In his role as an Associate Editor, Dr. Martins will focus on abdominal transplant, including organ preservation and ischemia reperfusion injury. We are honored to have Dr. Martins as our Associate Editor.…”

“…He is currently the incoming chair of UNOS Minorities Affairs Committee. He is working on projects to promote social equity and access to transplant for disadvantaged populations 7 …”

Equal Access to Organ Transplantation for People with Disabilities

“…More subjective psychosocial considerations often include the patient's understanding of the process, available support system, and anticipated ability to comply with medical recommendations and long‐term postoperative care. Although the NCD report finds that disabilities unrelated to a person's need for an organ transplant generally have little or no impact on the likelihood that the transplant will be successful, many organ transplant centers maintain policies that categorically exclude or disfavor placing people with HIV, psychiatric disabilities, or intellectual or developmental disabilities on the organ transplant waiting list 5 . While a patient's disability may be clinically relevant, categorical exclusion based on disability without any individual evaluation is deeply problematic from a clinical, legal, and ethical perspective.…”