Organ donation can be one of the most beautiful, live-giving gifts a person can give. Many people are alive today because someone chose to be an organ donor, allowing their heart, lungs, or other organs to live on in someone else’s body. Yet people with Down syndrome are frequently denied the opportunity to receive donor organs, solely because they have a disability. One lawmaker in Virginia is looking to change that.
Delegate Israel O’Quinn has just filed a state bill that would allow people with Down syndrome to receive organ donations. O’Quinn was approached by a family about the issue, so he took action, with the hope that this can help save lives of people with Down syndrome in Virginia. “It’s just wrong. I think to say that statute is long overdue for an overhaul is an understatement,” he told WCYB.
There is currently a lack of federal enforcement preventing discrimination in organ donation, and according to the NDSS, only a handful of states have laws prohibiting this discrimination.
Even though the Americans with Disabilities Act made health care discrimination illegal, a 2008 study from the Autistic Self Advocacy Network found that 85% of pediatric transplant centers take neurodevelopmental status into consideration for approving or denying transplants, with heart transplants often being the most difficult to receive. This discrimination continues to occur, even though success rates of transplants for people with intellectual or developmental disabilities are on par with the general population. As a 2010 review in the American Journal of Transplantation explained, “Currently, there is no scientific evidence or compelling data suggesting that patients with MR should not have access to organ transplantation.”
Yet it happens.
The problem of discrimination in organ transplantation is so pervasive that, in 2016, a bipartisan group of federal lawmakers sent a letter to the U.S. Department of Health and Human Services’ Office for Civil Rights about it. “Unfortunately, many transplant centers and surgeons continue to refuse to provide access to transplant registries and transplantation surgery to qualified people with disabilities,” the letter read.
The letter noted a statement from Dr. Arthur Caplan, director of medical ethics for New York University’s Langone Medical Center. He said, “If the potential recipient is severely intellectually impaired…. I do not think it makes sense to consider that child for a transplant.” Often, the person’s support network is not taken into consideration.
“This is discrimination that has life or death consequences,” U.S. Rep. Mike Honda, D-Calif. — who worked with Rep. Jaime Herrera Beutler, R-Wash., to write the letter to the HHS — told Disability Scoop. “Such discrimination directly violates the Americans with Disabilities Act and does not abide the American values of fairness and inclusion that we hold so dear as Americans, for all our communities.”
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