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Independent Living News & Policy from the National Council on Independent Living

Resolution Opposing Disability-Based Discrimination In Organ Transplantation

Submitted by: Diane Coleman

Adopted: July 23, 2020

WHEREAS, Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act prohibit federal and state health care programs from engaging in discrimination against people with disabilities; and

WHEREAS, Section 1557 of the Affordable Care Act similarly prohibits disability-based discrimination by health providers; and

WHEREAS, disability-based denial of lifesaving health care that is not based on the likelihood a treatment will be safe and effective constitutes discrimination within the meaning of the Rehabilitation Act of 1973, Americans with Disabilities Act, and Affordable Care Act; and

WHEREAS, nonetheless numerous organ transplant centers have official policies that deprioritize or deny organ transplants for patients with HIV, intellectual, developmental, or mental health disabilities; and

WHEREAS, nonetheless numerous organ transplant centers, during the candidate selection process, have impermissibly used characteristics of intellectual, developmental, or mental health disabilities as an explicit reason for the rejection of a candidate; and

WHEREAS, community members have reported experiences with physicians who impermissibly take HIV status and/or intellectual, developmental, or mental health disabilities into account when determining who is a candidate for organ transplant discrimination; and

WHEREAS, the weight of the medical evidence shows that people with intellectual, developmental, or mental health disabilities are equally likely to benefit from organ transplantation; and

WHEREAS, family-based and paid supports are often available to assist patients with HIV, intellectual, developmental, or mental health disabilities to follow necessary post-transplant care plans; and

WHEREAS, people with disabilities and their families as well as transplant centers and physicians themselves often are unaware that disability-based discrimination in organ transplantation is illegal; and

WHEREAS, nine states have passed laws specifically prohibiting disability-based discrimination in organ transplantation; and

WHEREAS, the National Council on Disability (NCD) has expressed concern about disability-based discrimination in organ transplants and has recommended that federal agencies issue further guidance and bring enforcement actions to counter such discrimination; and

WHEREAS, the disability community has a long history of experiencing discrimination in medical contexts, including through discriminatory denial of life-saving medical care;

THEREFORE BE IT RESOLVED that NCIL opposes disability-based discrimination in organ transplantation; and

BE IT FURTHER RESOLVED that NCIL will provide technical assistance to CILs to raise awareness that disability-based discrimination in organ transplantation is unlawful; and

BE IT FURTHER RESOLVED that NCIL will work with the Department of Justice and other relevant agencies to ensure that laws against disability-based discrimination are appropriately enforced with respect to organ transplantation discrimination; and

BE IT FURTHER RESOLVED that NCIL will advocate for and urge the Department of Justice and the Department of Health and Human Services, in collaboration, to implement guidance and technical assistance clarifying what organ transplant discrimination is, that it is prohibited under the Americans with Disabilities Act, Rehabilitation Act, and the Affordable Care Act, and providing examples of prohibited discrimination; and

BE IT FURTHER RESOLVED that CILs shall work with state and local governments to uphold and enforce state laws prohibiting organ transplant discrimination; and

BE IT FURTHER RESOLVED that NCIL shall provide resources to CILs who seek to forward those who have experienced organ transplant discrimination to parties who can provide them with legal assistance if they so wish it.