Topeka photographer Sarah Long placed a picture of her 4-year-old daughter next to a microphone Wednesday to illustrate the need for a state law prohibiting denial of organ transplants to persons with a disability solely due to that condition.
Her child, Willow, has Down syndrome and has undergone three open-heart surgeries to correct a congenital defect.
“I would like to believe that the world values my daughter enough that if her condition worsened and there was need for a heart transplant, that she would not be discriminated against because she happens to have an extra chromosome,” Long said.
Long appeared before the Senate Public Health and Welfare Committee in support of House Bill 2343, which was adopted by the Kansas House during the 2017 legislative session. After testimony from several proponents, the Senate committee voted to approve the bill. No individual or organization opposed the measure.
Rocky Nichols, executive director of the Disability Rights Center of Kansas, said the bill would place in Kansas statute provisions of the federal Americans with Disabilities Act designed to inhibit discrimination. The ADA prohibits denial of medically necessary organ transplants simply because someone has a disability, but the average patient or family member would have difficulty enforcing those rights in court.
The proposed law blocks Kansas health care providers from refusing to make a transplant referral, from denying a person a place on a transplant waiting list or from rejecting patients for transplant surgery simply because the individual has a disability, Nichols said.
Nichols said the legislation wouldn’t keep a physician from recommending against transplants for a person with disabilities if the decision was related to medically significant factors.
“Disability is normal,” he said. “It is not to be feared, or pitied, and certainly not used as a reason to deny someone a much-needed organ transplant. Disability is a normal part of the human condition, and this bill helps reinforce that fact.”
He said there was no evidence Kansas hospitals performing transplants — University of Kansas Hospital and Children’s Mercy Kansas — were suspected of engaging in discrimination related to organ transplants.
In 2008, a survey by Stanford University researchers indicated 85 percent of pediatric transplant centers considered developmental and intellectual disability as a factor in transplant eligibility. In the study, 46 percent of heart programs considered mild or moderate cognitive impairment a reason to declare a person ineligible for transplant.
Rick Cagan, executive director of the Kansas chapter of the National Alliance on Mental Illness, said some doctors shared the public’s prejudice against people with mental illness.
“Denial of transplantation on the basis of schizophrenia or non-compliance violates the Americans with Disabilities Act,” he said. “However, getting those rights enforced in federal law is hard.”