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Capitol Correspondence - 03.18.19

NDC Releases Statement on People with Disabilities’ Access to Organ Transplants

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ANCOR is sharing this statement and update by the National Council on Disabilities (NCD) because people with intellectual / developmental disabilities (I/DD) have long been significantly and disproportionately affected by unequal access to health care compared to their peers without disabilities. To make a policy connection to this story, ANCOR supports the re-introduction of the HEADs UP Act in the 116th Congress, which seeks to designate people with disabilities as a medically underserved population (MUP). MUP designation would help allocate more funding to ensuring people with disabilities can receive the care they need.

As written by NCD:

“The National Council on Disability applauds the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services for its recent swift action to prevent the University of North Carolina Health Care System (UNC Health Care) from denying a person with an intellectual disability the opportunity to be placed on the United Network for Organ Sharing (UNOS). OCR’s action in this matter is a reminder to the medical community that the lives of people with disabilities are as valuable as the lives of people without disabilities and that making medical decisions based on stereotypes about people with disabilities violates federal disability rights laws.

This matter stemmed from a complaint alleging that a person with an intellectual disability needed a heart transplant – without which they would die. But a doctor on staff at UNC Health Care determined that the person was not a candidate for the transplant because the person had a developmental learning disability and did not live independently. It is unconscionable that a person would be denied the opportunity to receive a life-saving treatment based on these reasons, but it is not an uncommon practice. The time to stop such discriminatory practices is long overdue. 

People with disabilities rely on the medical community to provide equal access to high-quality healthcare, but to date, they continue to confront barriers to receiving access to this care. When the medical community establishes policies and practices that discriminate against people with disabilities they not only break the law, they perpetuate the devaluation of the lives of people with disabilities. People with disabilities face this devaluation on a daily basis in various areas of their lives, but in the healthcare context it may literally be a matter of life or death.

It is well established that the devaluation of the lives of people with disabilities by the medical community reaches far beyond organ transplants. It can be seen at the beginning of life, when parents are advised against having a child who might have a disability; when a woman in a wheelchair cannot get a gynecological exam because her doctor’s office does not have an exam table that is accessible; to a medical decision to stop providing medical care to a severely disabled person – even when the person could continue to live if treated.

Decisions like the one made at UNC Health Care are made every day in America’s hospitals, and lives that could be saved are being lost. This year, NCD is taking on the many areas where people with disabilities face discrimination and devaluation in healthcare in a broad-based, systematic manner. We are calling on the medical community to be aware of their responsibilities under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act and to act to address the persistent systemic devaluation of the lives of people with disabilities.

  • Recently, at NCD’s recommendation, the American Dental Association revised its Principles of Ethics and Code of Professional Conduct to prohibit dental care providers from denying care to patients because of their disability.
  • We are examining the accreditation process and curriculum development at medical schools throughout the country.
  • We will release a five-report series this summer on bioethics and disability which highlight areas of critical importance, including physician-assisted suicide; cost-effectiveness models used by insurers and health economists that result in limiting access to medicines and medical treatments; organ transplants; medical futility decisions; and genetic testing/gene modification.
  • We will also publish a report in early 2020 on the issue of inaccessible medical equipment, such as exam tables and diagnostic machines, which prevent people with mobility disabilities from receiving appropriate preventative healthcare and contribute to the significant health disparities that exist between people with disabilities and those without.”