{"id":236577,"date":"2020-12-23T17:41:22","date_gmt":"2020-12-23T23:41:22","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=236577"},"modified":"2020-12-22T19:09:23","modified_gmt":"2020-12-23T01:09:23","slug":"bipartisan-bill-ban-disability-discrimination-organ-transplants","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/bipartisan-bill-ban-disability-discrimination-organ-transplants\/","title":{"rendered":"‘Monumental step’: Bipartisan bill would ban disability discrimination in organ transplants"},"content":{"rendered":"
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In a long-overdue effort to address inequality in health care, a\u00a0bipartisan bill has been introduced which would ban discrimination in organ donation based on a patient’s disability. Introduced by Republican Rep. Jaime Herrera Beutler and Democrat Rep. Katie Porter, the Charlotte Woodward Organ Transplant Discrimination Prevention Act<\/a> would prohibit using a patient\u2019s disability as the sole basis of ineligibility to receive a transplant.<\/p>\n

The bill is named after Charlotte Woodward, a woman with Down syndrome who underwent a successful heart transplant, and who\u00a0frequently speaks out against the discrimination she and others with Down syndrome face. Though Woodward was lucky enough to receive a heart transplant, many others with Down syndrome are denied, simply because of their disability.<\/p>\n

\u201cI started to exhibit the telltale signs that my heart wasn\u2019t keeping up with the rest of my body. So my doctors decided I would be a prime candidate for a heart transplant,\u201d she told TODAY<\/a>. \u201cBut there is a catch. Not many people with Down syndrome have the opportunity to get lifesaving organ transplants and that is because of discrimination.\u201d<\/p>\n

READ:\u00a0Woman with Down syndrome: UK law says people like me are \u2018better off dead\u2019<\/a><\/em><\/strong><\/p>\n

Currently, there is no federal legislation banning this kind of discrimination, and according to the National Down Syndrome Society (NDSS), only a handful of states<\/a> have passed laws to prohibit it. A 2008 study<\/a> from the Autism Self-Advocacy Network found that 85% of pediatric transplant centers take neurodevelopmental status into consideration for approving or denying transplants.<\/p>\n

A bipartisan letter<\/a> in 2016 was sent to the U.S. Department of Health and Human Services\u2019 Office for Civil Rights about the issue, pointing out that many transplant centers continue to refuse access to organ transplants to people with disabilities. The letter included a statement from Dr. Arthur Caplan, director of medical ethics for New York University\u2019s Langone Medical Center, who said, \u201cIf the potential recipient is severely intellectually impaired… I do not think it makes sense to consider that child for a transplant.\u201d<\/p>\n

The medical community tends to still forward the notion that people with disabilities cannot handle the aftercare process of a transplant. This \u2014 says Ashley Helsing, director of government relations at NDSS \u2014\u00a0is a myth. \u201cThere have actually been studies done that show that people with disabilities actually do better after getting a transplant than people without,\u201d Helsing told TODAY. \u201cAgain, it goes back to those preconceived notions and misconceptions that are rampant in society.\u201d<\/p>\n

Woodward herself says the issue is simple. \u201cIt boils down to a bias in the whole health care system and sends a message to people with Down syndrome about whether they have worth and value and whose lives matter the most,\u201d she said.<\/p>\n