People with disabilities who need organ transplants deserve parity

If I were diagnosed with a condition resulting in organ failure tomorrow, there is no guarantee that any doctor in Pennsylvania would put me on a transplant list. I’m 25 years old and fairly healthy. I’ve never smoked a cigarette or done drugs, and I only drink on Election Day. But I am autistic. And while provisions of the Americans with Disabilities Act suggest that doctors should not discriminate against people with disabilities like mine, that hasn’t stopped it from happening to people like Paul Corby of Pottsville, Pa., who shares my diagnosis and has been fighting for his heart transplant since 2012.

Paul isn’t alone. Surveys of transplant centers across the country show that most have unofficial policies disqualifying some or all people with intellectual and developmental disabilities from receiving transplants of any kind. This sends a clear message that the lives of people with disabilities like mine are less worthy of lifesaving medical care. That is not OK. Pennsylvania state Sen. John Sabatina Jr., D-Philadelphia, didn’t think so either. That’s why he introduced Senate Bill 108, better known as Paul’s Law.

Paul’s Law is a piece of legislation amending the laws that govern organ transplants in Pennsylvania so that people with disabilities cannot be disqualified from receiving transplant care based on their disability alone if that disability is not medically relevant. It also instructs treatment teams to take the support system of people with disabilities into account when considering whether a person will be able to follow directions for the post-surgical and ongoing care that organ transplant requires. Continue reading

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