A Donor Heart Saved Her Life. Why Are Others With Down Syndrome Denied Transplants? (Exclusive)
Charlotte Woodward was born with a heart defect, as nearly half of all people with Down syndrome, and 13 years ago, received a donor heart that saved her life
Research has shown people with Down syndrome and other disabilities face discrimination when being evaluated for organ transplants
Woodward has been fighting for justice for others with disabilities in need of transplants, and now a bill that could help is awaiting a floor vote in CongressCharlotte Woodward's doctors tell her she's a boring patient — even though she lives with a transplanted heart. 'It's because I'm so healthy,' she explains. 'I take very good care of my heart.'
Woodward, 35, knows she's lucky. Born with a heart defect — like nearly half of all people with Down syndrome — she received her donor heart in 2012.
But research has shown that more than 40% of pediatric transplant centers often consider intellectual disabilities a cause for concern when evaluating for organ transplants, because of assumptions that patients with disabilities may not be able to care for themselves and because of 'preconceived notions about their quality of life,' says Michelle Sagan, communications director for the National Down Syndrome Society (NDSS). 'Their life is seen as not as important.'
Another study found that adults with intellectual and developmental disabilities are less than half as likely to receive a kidney transplant as adults without IDD.
Woodward has been working to change that. In 2020, she led a successful campaign to pass a bill in her home state of Virginia protecting those who are disabled from transplant discrimination.
And now a similar federal bill named in her honor has been passed by a House committee and is headed for a floor vote in the House. It aims to provide protections, in part by mandating an expedited judicial review if someone is denied a transplant and believes their civil rights have been violated.
'People with Down syndrome and other disabilities should not be denied a lifesaving opportunity,' says Woodward, a program associate at the NDSS who went viral on the group's TikTok in 2020 for her video on "Things About Having Down Syndrome That Don't Make Sense". 'We need a legal solution to make it clear that blatant discrimination is wrong and is not permissible. I don't think people are doing it maliciously. They're just uneducated. It's rooted in fear and ignorance."
From the day she was born, Woodward was underestimated, says her mom, Darcy. 'I was told she most likely never would read or write. It bewildered me. I didn't understand how someone could predict a baby's future.' Darcy ignored the warnings and read to her daughter, who learned to read by the time she was 4: 'I've been in awe of her every day of her life.'
Her health was more concerning. She had four open-heart surgeries by age 10, and by the time she was 22, her heart began to fail. Her cardiologist told her mom he would have to 'go to bat' and work to convince hospital officials to get her name on the transplant list.
'He knew there might be opposition from the transplant team,' Woodward says. Fortunately she was matched with a donor heart in less than two weeks — and went on to graduate summa cum laude with a sociology degree from George Mason University.
When Woodward, who loves to dance, is learning to play the electric guitar, and is in a long-term relationship with Peanut Butter Falcon actor Zack Gottsagen — began her job at NDSS, she learned her transplant experience was not the norm.
The knowledge pained her. 'There have been many stories about denials of organs and transplants. We will never know how many,' she says, tearing up. 'I think, 'How could you?' '
The solution, she says, is legislation and education.
'I don't think people are doing it maliciously. It's rooted in fear and ignorance,' says Woodward, who urges people to consider organ donation — and call their representatives in Congress and urge them to support her bill. 'People with Down syndrome are just that: people. They have strengths and challenges like everyone else. They shouldn't have to prove their worth in order to get a transplant.'
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