People with Down syndrome often refused organ transplants due to discrimination

Charlotte Woodward was born with congenital heart disease and as a child she underwent four open heart surgeries.

“Everyone thought my fourth was going to be my last,” Woodward, 33, a program related to the National Down Syndrome Association, told Today.com. “It wasn't the last time… my mind really struggled to catch up with the rest of my body, so as a result I had a low cardiac output, fainting.

The doctors were worried about Woodward's health and knew something needed to be done. The only option they hadn't tried was a heart transplant. Woodward also has Down syndrome, and people with disabilities are more likely to be denied access to organ transplants than in the general population. Research Show.

Luckily, her cardiologist didn't think she should suffer from Down syndrome.

“I am very grateful to the doctors who have looked beyond my Down Syndrome diagnosis and who I am and what I can do,” she says. “I was finally transplanted on January 30th, 2012.”

However, many other children with Down syndrome lose their lives because they don't get the same opportunity as Woodward.

In 2021, Zion Sarmiento, an infant with Down syndrome in Florida, underwent five open heart surgeries within two weeks, his parents wrote They started with his honor, Zion's army. He needed a heart transplant, but despite his other organs being healthy, three hospitals refused to do it, and he had brain activity.

After being repeatedly denied a heart transplant, Shion passed away less than four months after being born in October 2021.

Few studies are available regarding the frequency with Down syndrome who need a transplant and are denied access. But it's spread enough to announce the National Council on Disabilities Reports for 2019 With a phenomenon.

The report found that a 2004 survey found that only 52% of people with disabilities who requested an assessment of an organ transplant were actually referred to relevant experts, while 35% of people who were proposed to have had a transplant were not evaluated.

A 2008 Pediatric Transplant Center survey found that 43% viewed intellectual disability as a “contraindication” to transplant. This is a term for medical interventions that is not recommended due to existing conditions or other aspects of the patient's health. Transplant centers must agree to treat patients to add them to the national waiting list.

2022 paper Journal of the American Heart Association Although about half of babies with Down syndrome are born with congenital heart defects, they simply state that “transplants in patients with Down syndrome are rarely reported.”

One of the main reasons why people with Down syndrome are discriminated against for organ transplants is the assumption that people without Down syndrome do not get results. However, research finds the opposite.

According to a 2022 study, 26 pediatric patients with Down syndrome who received a heart transplant between 1992 and 2020 had similar survival rates and postoperative complications as their Down syndrome-free peers.

In its 2019 report, the National Council on Disability wrote: “These denials are often based on discriminatory assumptions that the lives of people with disabilities are of lower quality than those without disabilities, and misconceptions about the ability of people with disabilities to adhere to postoperative care.”

Woodward agrees that “assumptions about our biases and subjective judgments regarding the value of life and disability, as well as misconceptions regarding their quality of life and their ability to apply to postoperative care” contribute to discrimination.

“I was a success story,” she adds. “Many people with Down syndrome, or even other people with intellectual or developmental disabilities, have not gotten the life-saving procedures I did.”

Woodward is the name of federal law that prevents discrimination regarding organ transplantation. A 2019 report found that many healthcare providers and transplant centers don't even recognize this as the case may also apply to organ transplants, and therefore it is a violation of the Americans with Disabilities Act to not provide treatment to people with disabilities. Therefore, the new law will be built on ADA protection. Press Release Notes.

Rep. Cat Cammack and Debbie Dingel reintroduced the Charlotte Woodward Organ Transplant Identification Act in February 2025. National Down Syndrome Association. If the law was passed, the transplant center could not deny people with organ transplants with Down syndrome based on the disability.

Woodward eventually received her transplant, but she points out that a cardiologist must defend her.

“He really had to go for me for me because he knew there might be institutional failure and discrimination,” she says. “The good thing is that the transplant team met me. They… not only saw beyond my diagnosis of my disability, but also recognized my inherent (values) and as a result, they believed I deserved the opportunity to have a life-saving heart transplant.”

Woodward is optimistic that the bill could become law and feels it may prevent others with disabilities from refusing to transplant.

“We never know the stories of many disabled people who have been denied access and have died as a result.