Disability advocates testified in front of the Massachusetts Public Health Committee on October 20, in favor of a bill seeking to end disability discrimination in health care decisions concerning whom should receive organ transplants.
“We demand equal protection under the law for disabled people and oppose any discrimination justified by appeals to quality of life judgments,” long-time advocate John Kelly testified, on behalf of Not Dead Yet and Second Thoughts Massachusetts.
The bill, sponsored by Representative Jim Cantwell, would prohibit health care providers from denying potential recipients of donated transplants solely on the basis of their disabilities. While many disability rights advocates argue this is already the law under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, multiple states have sought in recent years to clarify this anti-discrimination principle in their state laws.
New Jersey, passed the first such anti-discrimination law in 2012, in response to public backlash in the case of Amelia Rivera, a 3-year-old with Wolf-Hirschhorn whom was initially denied a kidney transplant by the Children’s Hospital of Philadelphia.
California has passed similar legislation, meaning Massachusetts, if it passes the bill, would become the third state to do so.
The Autistic Self Advocacy Network released an extensive report in March 2013, finding pervasive disability discrimination in transplant decisions. Of the health care providers surveyed in the report, nearly half reported that they decline to refer people with disabilities for evaluation in organ transplant decisions. It also found that many doctors excluded people with disabilities from such considerations based on “quality-of-life” considerations, and are unaware of the ADA’s applicability in such determinations.
“Individuals with mental and physical disabilities have historically been denied life-saving organ transplants based on assumptions that their lives are less worthy, that they are incapable of complying with post-transplant medical regimens, or that they lack adequate support systems to ensure such compliance,” the bill states. “Although organ transplant centers must consider medical and psychosocial criteria when determining if a patient is suitable to receive an organ transplant, transplant centers that participate in Medicare, Medicaid, and other federal funding programs are required to use patient selection criteria that result in a fair and nondiscriminatory distribution of organs.”
ASAN’s “Guide for Advocates” for antidiscrimination in transplant decisions [PDF] is available online.