NCD Letter to HHS and DOJ on Organ Transplants

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September 25, 2019

Roger Severino
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington DC 20201

Rebecca Bond
Chief, Civil Rights Division
Disability Rights Section - NYA
U.S. Department of Justice
950 Pennsylvania Avenue, NW
Washington, D.C. 20530

Dear Mr. Severino and Ms. Bond:

I write as Chairman of the National Council on Disability (NCD) to urge the Department of Health and Human Services Office for Civil Rights (HHS OCR) to issue guidance in conjunction with the Department of Justice on organ transplant discrimination against persons with disabilities and provide technical assistance clarifying that Titles II and III of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504) apply to organ transplant centers and hospitals.

NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy to advance the goals of the ADA: equal opportunity, full participation, independent living, and economic self-sufficiency for people with disabilities. This week, NCD submitted a report to the President and Congress titled, Organ Transplant Discrimination Against People with Disabilities,[1] This report is the first to be released from a five-report series on bioethics and disability, which focus on how the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care.

In this report, NCD found, among other things, that people with disabilities are frequently denied access to organ transplants based on transplant centers’ written and unwritten policies excluding people with disabilities as candidates for a transplant, and even refusing to evaluate a particular person’s medical suitability for an organ transplant because of the person’s disability. These policies may arise partly out of a desire to allocate a precious and limited resource, but they are driven by misguided ideas about the capacity of people with disabilities to benefit from organ transplantation either because of the belief that a person with a disability will be unable to comply with the post-transplant regimen, or because physicians and transplant centers undervalue the lives of people with disabilities to the point that they deem them unworthy of an organ and life itself.

Some might posit that the scarcity of organs should allow healthcare practitioners to include their personal judgments about a person with a disability’s  quality of life in the determination of who should be eligible for an organ transplant, however, subjective judgments about the quality of life of people with disabilities have no place in medical decisions. Such judgments often are that people with disabilities, by virtue of being disabled, have a lower quality of life, and that belief, in turn, results in undervaluing  their lives. When subjective judgments are inserted in such decisions, the result can be a deadly form of discrimination.

Another reason put forth for denial of transplant eligibility is the opinion that people with disabilities cannot follow post-operative care. This is a generalization based on stereotypes about lack of capability. Research has shown that individuals who receive proper supportive services that consider their specific needs are perfectly capable of following complex post-operative care regimens. Coordination between the person’s primary care and other providers, the person’s circle of support, and the transplant team is common practice for people who receive an organ transplant, and such coordination and support should be provided to people with disabilities as well.

In 2016, 30 members of Congress wrote a letter urging HHS’s Office for Civil Rights (OCR) to issue guidance clarifying that: (1) organ transplant discrimination violates Title II of the Americans with Disabilities Act, (2) transplant entities must incorporate the patient’s support network and services into eligibility policies and practices, and (3) people with disabilities should be provided with all necessary auxiliary aids and services they need for a successful organ transplant and postoperative regimen. No guidance was issued, but guidance from DOJ and HHS should be issued now. It is long past time to repudiate the pernicious, pervasive and persistent justifications for discrimination.

Based on the complete set of findings in our report, NCD calls on HHS, together with DOJ, to issue guidance clarifying that Titles II and III of the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 apply to organ transplant centers and hospitals. Specifically, in addition to the items proposed in the 2016 letter from Congress, federal guidance should also:

  • Emphasize that physicians must assess candidates for organ transplants individually, and without stereotypes about disability.
  • Explicitly state that making assumptions regarding the post-transplant quality of life for people with disabilities violates federal law.
  • Make clear that the ADA and Section 504 apply throughout the organ transplant process, including informal eligibility determinations, such that disability should only be considered to the extent it can be clearly shown to be likely to impair successful transplantation.
  • Encourage priority review of any cases brought challenging discrimination on the basis of disability in the organ transplant context in acknowledgement of the time-sensitive nature of a transplant denial.
  • Delineate organ transplant center and physician responsibilities under Section 504 and the ADA to make reasonable modifications in their policies, practices and procedures for individuals with disabilities seeking transplantation, and to ensure effective communication with those individuals including, by providing, among other things, accessible digital and print materials for patients and families.
  • DOJ and HHS should also provide technical assistance to organ transplant centers and physicians in complying with the foregoing obligations. Issuing guidance and providing technical assistance would increase the likelihood that the application of the ADA, Section 504, and Section 1557 to the organ transplant process would be understood and that compliance with these laws would prevent disability discrimination in the organ transplant process.

Every life is valuable and worthy of saving. People with disabilities should not be denied their right to live because of discriminatory medical decisions based on stereotypes and misguided notions about disability. It is nearly 30 years since President George H.W. Bush signed the ADA and declared, “Let the shameful wall of exclusion finally come tumbling down.” That shameful exclusion persists in organ transplants and it is imperative that HHS and DOJ act to ensure that individuals who need organ transplants are treated fairly under federal laws.

NCD lauds HHS’s Office for Civil Rights for your efforts to protect the rights of people with disabilities in the medical context and your recent action to remedy organ transplant discrimination in North Carolina. We urge that the same leadership your office demonstrated in the North Carolina case be demonstrated in the authoring and issuance of federal guidance, and we are solidly committed to working with you and DOJ to ensure that people with disabilities do not face discrimination in the organ transplant process.

Should you have questions about this report or wish to discuss, please contact Joan Durocher, General Counsel and Director of Policy, or Ana Torres-Davis, Attorney-Advisor, at jdurocher@ncd.gov or attoresdavis@ncd.gov or (202) 272-2004.

Respectfully,

Neil Romano
Chairman