When Charlotte Woodward was 22-years-old, her doctors told her she needed a heart transplant.
Woodward, who has Down syndrome, was born with an atrioventricular heart defect that includes a hole in the wall between the heart’s chambers and flaws in its valves. It is common for babies with Down syndrome to be born with a heart condition; according to the National Down Syndrome Society, approximately half of all infants born with Down syndrome have a heart defect.
Woodward had multiple surgeries as a baby and child to fix the issue, but her heart couldn’t keep up with her body as she grew. Woodward experienced frequent fainting spells, low energy and shortness of breath, among other symptoms. Eventually, her doctors told her a transplant was necessary to preserve her quality of life. Woodward’s team of doctors put her on the transplant list. Eleven days later, she had the operation.
But Woodward’s positive experience with getting on the transplant list – and quickly having an operation – is rare. In fact, many with Down syndrome and other disabilities are not prioritized for transplants, and are often turned away, just because they have a disability.
“Many people with Down syndrome in society aren’t considered to be candidates for an organ transplant, and that begs the question, whose lives are valuable?” Woodward said.
The National Down Syndrome Society (NDSS) has been working to combat this issue and, over the past year, has been working with members of Congress to propose federal legislation. In late December of 2020, Congresswoman Jaime Hererra Beutler (R – WA) and Katie Porter (D- CA) introduced legislation called the Charlotte Woodward Organ Transplant Discrimination Prevention Act to prevent organ transplant discrimination. The legislation is named after Woodward, who has been advocating to prevent transplant discrimination since her surgery nine years ago.
“I wasn’t fearful about having a heart transplant because I had a great support system with my family and my doctors and everything,” Woodward said. “But I was fearful that I might not be around if something like that [if she was denied a transplant based on her disability] had occurred.”
“Since my transplant, I have been able to go on to do lots of good things. For instance, I am a certified medical assistant. I have a wonderful job at the National Down Syndrome Society. And I’m also at college at George Mason University studying sociology with a concentration in social change and inequality.”
According to the Developmental Disabilities Coalition, a 2008 survey of 88 transplant centers conducted by researchers at Stanford University found that 85% of pediatric transplant centers consider intellectual or developmental disability as a factor in their transplant eligibility determinants. The study also found that 71% of heart programs surveyed “always” or “usually” considered intellectual/developmental disability diagnosis when deciding transplantation eligibility. According to a National Council On Disability study in 2019, the primary forms of disability discrimination practiced by organ transplant centers are the refusal to evaluate a person with a disability as a candidate for transplant, and the refusal to place a person with a disability on the national organ transplant waiting list.
“It’s statistics like that that make people sit back and evaluate why legislation like this is necessary,” said Ashley Helsing, the director of government relations at the National Down Syndrome Society.
The National Down Syndrome Society has worked for years at passing organ transplant discrimination prevention legislation at the state level. Currently, 15 states, including California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Washington, Louisiana, and Indiana, all have legislation. In 2020, three more states passed legislation, including Missouri, Iowa, and Virginia.
Woodward, who lives in Fairfax, Virginia, had a tremendous hand in helping Virginia’s legislation pass. In February of last year, she told her story in front of the state’s health committee, which unanimously supported the legislation and passed it through the committee.
“In the work that we’ve done, there are these stories we keep hearing, where families are picking up and moving to states that have legislation, so their sons or daughters or loved ones with a disability can be given equal consideration to everybody else who needs a transplant,” Helsing said.
As the nonprofit worked its way across states promoting and working to implement legislation, their efforts were noticed by Congress members, including Rep. Herrera Beutler of Washington. Herrera Beutler approached NDSS about her interest in creating federal legislation, and the congresswoman and nonprofit began working together.
Herrera Beutler had her own organ transplant experience when her seven-year-old needed a kidney transplant; her husband was the donor.
“I’ve walked through each step of this process. It breaks my heart to think that someone with Down syndrome could be turned away solely because of a disability when they’re in need of a life-saving organ,” Rep. Herrera Beutler said in an email statement.” Charlotte Woodward is such a wonderful example of why it’s important to give everyone this gift of life.”
Herrera Beutler reached across the aisle, and with Katie Porter co-sponsoring, the congresswoman introduced the transplant bill.
“Only a handful of states have laws barring [organ transplant] discrimination; it’s time to give all Americans with disabilities access to the gift of organ donation,” Rep. Herrera Beutler said.
Rep. Porter agreed.
“For thousands of Americans, getting the transplant they need is the difference between life and death,” Porter said in an email statement.
“I have partnered with Rep. Herrera Beutler before on bipartisan family-friendly legislation, and I was eager to work with her again on this bill that will help Americans with disabilities and their families. We’re going to keep pushing to get this bill over the finish line.”
The bill would prohibit doctors, hospitals, transplant centers, and other healthcare providers from denying access to organ transplants to someone because they have a disability. It would also require that providers consider evaluating the likelihood of transplant success and provide the full range of supports available to help somebody with a disability manage their aftercare. And lastly, it would fast track procedures that are already in place for challenging discrimination to ensure that people who currently need a transplant can finally receive one promptly.
The bill was introduced during the last Congress but will need to be re-introduced this month when Congress reconvenes. At that time, NDSS says they will be “going full throttle” in encouraging their advocates across the country to reach out to their Congress members to support the legislation and ensure it passes and is signed into law.
In the meantime, Woodward continues to advocate and tell her story, too, in hopes of helping this federal legislation pass.
“It would mean a whole lot to people with Down syndrome to have inherent value,” Woodward said.
“It’s important that people with disabilities are given equal consideration for organ transplants.”
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