A national trend among 12 states is paving the way for new legislation that benefits disabled people who may need organ transplants. California, Maryland and New Jersey already have legislation that benefits people with said disabilities – physical and mental, according to the New York-based National Down Syndrome Society. About 112,500 people in the United States are awaiting organ transplants.
Florida is one of eight states pending legislation.
Florida’s Legislature is moving toward ensuring new protections for individuals who may be denied an organ transplant due to a physical or mental disability. A new bill would formally ban insurance companies and others from denying transplants to people with disabilities, physical and mental.
Committees in the House and the Senate unanimously approved bills on the subject last week.
There are many organ transplant centers that have policies that ban or caution against placing people with HIV, psychiatric disabilities or intellectual and developmental disabilities on waiting lists to receive an organ transplant, according to a 2019 report for President Donald Trump by the National Council for Disabilities.
The Americans with Disabilities Act grants protection under the law for the physically and intellectually disabled. The Council’s report, however, reveals that medical professionals and organ transplant centers are often unaware that the law applies to the organ transplant process. The proposal has been met with resistance even in states that have previously approved banning organ transplant discrimination laws, such as the bill awaiting approval in Florida.
For example, last year federal regulators settled a complaint against the University of North Carolina. The University’s health care system came under fire after a doctor denied a patient a heart transplant because of mental disability and because the patient lived alone.
“Every life is precious and no one should be blocked from access to an organ transplant because of stereotypes about persons with disabilities,” Roger Severino, the director of the Office of Civil Rights for the U.S. Health and Human Services Department said in a statement.
The process of seeking an organ transplant is stressful and can be a long one. Disabled patients who are denied organs may not even realize they were illegally discriminated against. Michelle Gilchrist, chief executive officer of the National Foundation for Transplants, based in Memphis, Tennessee said patients are considered for a transplant based on some factors such as economic and environmental. Gilchrist says it would be biased to decide to not give someone an organ transplant because they have Down syndrome and are expected to have a short life span.
The State of Georgia is considering Gracie’s Law, a similar bill named after the infant daughter of nurse Erin Nobles of Louisville, Georgia, whose daughter was born with Down syndrome.