In a letter sent this month to the U.S. Department of Health and Human Services’ Office for Civil Rights, 30 members of the U.S. House of Representatives urged the agency to address what they called “persistent” organ transplant discrimination.
“Unfortunately, many transplant centers and surgeons continue to refuse to provide access to transplant registries and transplantation surgery to qualified people with disabilities,” reads the correspondence to Jocelyn Samuels, director of the Office for Civil Rights.
No one should be denied their right to life simply because of their intellectual and/or development disabilities,” the lawmakers wrote.
In recent years, a handful of high-profile cases have highlighted the disparities faced by people with developmental disabilities needing organ transplants. In 2012, then-3-year-old Amelia Rivera, who was diagnosed with intellectual disability and Wolf-Hirschhorn syndrome, was initially denied a kidney transplant, but doctors reversed course amid public outrage. In a separate case later that same year, the family of Paul Corby said that his autism diagnosis was cited when he was turned down for a heart transplant.