Sara Hart Weir: Protect Kansans with Down syndrome and other disabilities from organ transplant discrimination

In 1995, Sandra Jensen, a 34-year-old California woman with Down syndrome, had a terminal heart condition and was told she needed a heart and lung transplant in order to live. Her insurer approved the procedure if the transplant took place at one of two transplant centers in California. Both denied her.

One of the hospitals refused Sandra’s request without ever meeting with her, indicating that people with Down syndrome were considered categorically inappropriate for transplants. After a national outcry, one hospital relented, performing the life-saving procedure. Sandra became the first person with an intellectual disability to have a transplant. In 1996, the state of California passed a law to prohibit organ transplant discrimination for people with disabilities. Subsequently, New Jersey, Maryland and Massachusetts followed suit, and now Kansas has a chance to be a leader on this issue.

Last year, James, a young man with a dual diagnosis of Down syndrome in need of a lifesaving kidney transplant, walked in to meet with a leading kidney surgeon. That surgeon, after taking one look at James, turned to his parents and said “his IQ is not high enough, I am not doing the procedure.”

This is unacceptable, and the Kansas Legislature should take immediate action in these final weeks by enacting House Bill 2343 – a bill to ensure Medicare-funded hospitals and transplant facilities cannot deny an organ transplant to otherwise eligible patients by their disability alone.

The Legislature is considering a measure aimed to save countless lives of people with disabilities in dire need of organ transplants. Without this bill in place, despite some restrictions by the Americans with Disabilities Act of 1990, doctors at transplant facilities and hospitals are free to decide whether people with disabilities’ lives will be meaningful enough to deserve an organ. When it comes to Sandra, James and so many others with disabilities – the overwhelming answer from transplant surgeons continues to be “no.”

As the leading human rights organization for all individuals with Down syndrome, the National Down Syndrome Society finds it troubling that people with disabilities still do not receive equal consideration for organ transplants despite federal protection. In 2017, people with Down syndrome and other disabilities are achieving extraordinary measures – graduating alongside their peers, attending postsecondary programs, seeking out meaningful careers, getting married and living long, healthy lives (well into their 60s and in some cases, 70s).

The idea that a person with Down syndrome should be barred from receiving a life-saving organ is discrimination and a violation of a basic human right. Leaders in Kansas should work to ensure the right to lifesaving transplants is a right for everyone – not just a few.

Sara Hart Weir is president of the National Down Syndrome Society in New York City and Washington, D.C., and a Kansas native.