FOR IMMEDIATE RELEASE
NDSS MEDIA CONTACT:
LAWMAKERS INTRODUCE FEDERAL LEGISLATION TO PREVENT ORGAN TRANSPLANT DISCRIMINATION
Washington, D.C. (December 2, 2021) - The National Down Syndrome Society (NDSS), the leading human rights organization for all individuals with Down syndrome, applauds the introduction of the Senate companion to the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235/ S.3301) to prohibit discrimination on the basis of mental or physical disability in cases of organ transplants.
In February 2021, Congresswomen Jaime Herrera Beutler (R-WA) and Katie Porter (D-CA) introduced H.R. 1235, the Charlotte Woodward Organ Transplant Discrimination Prevention Act, in the 117th Congress in the House of Representatives. Today, Senators Marco Rubio (R-FL) and Maggie Hassan (D-NH) have introduced companion legislation in the Senate. The bill prohibits discrimination based solely on disability before, during, and after an organ transplant procedure. This legislation reinforces and supplements rights established or supported by existing civil rights laws, most notably the Americans with Disabilities Act, Sec. 504 of the Rehabilitation Act of 1973 and Sec. 1557 of the Affordable Care Act.
The bill is named for Charlotte Woodward, an adult with Down syndrome and member of the NDSS staff who received a life-saving heart transplant almost ten years ago. Since then, she has advocated tirelessly to ensure people with Down syndrome and other disabilities get the same chance that she did.
“As someone with Down syndrome who has had the opportunity to receive a life-saving heart transplant, I am so very grateful that this bill will give others the same opportunity,” said Charlotte Woodward. “Too many precious lives have been lost due to discrimination in organ transplantation. I am so very, very thankful for the generosity of my heart donor and that of her loving family. Her gift has allowed me to live my life to the fullest and to go on to advocate for others to be able to do the same. The passage of this bill will be a monumental step towards a more just world, and I am proud to play a part in it.”
In addition to enumerating specific instances of potential discrimination, the bill also proactively promotes access to services by requiring health care providers to make reasonable modifications to policies, practices, and procedures related to organ transplant care. Even so, the bill does not discount their professional judgment through new mandates. Instead, it clarifies what they are already meant to do: refrain from treating patients with disabilities differently than they would if they did not have disabilities.
“People with disabilities are no less deserving of life-saving organ transplants than people without disabilities,” said NDSS President and CEO Kandi Pickard. “We need a federal law to protect the rights of members of our community and to honor the value they bring to society. Charlotte’s bill reflects the interstate nature of the organ transplant system, recognizes the need for expedited review when access is denied, and establishes a legal framework for individuals and providers to seek truth and reach meaningful resolution. We are grateful to Senators Rubio and Hassan for introducing this legislation.”
While Charlotte’s bill was introduced almost a year ago, a recent story about a Florida infant named Zion Sarmiento has helped to elevate the issue of organ transplant discrimination. Baby Zion was born in June 2021 with Down syndrome and a congenital heart defect. Despite undergoing several surgeries, Zion needed a heart transplant to survive. He did not receive one and tragically passed away in October. With remarkable grace, the Sarmiento family has chosen to turn their grief into action and has been working with NDSS to advance Charlotte’s bill.
“It is heartless to discriminate against someone in need of an organ transplant because they have a disability,” Senator Rubio said. “Zion, a 16-week old baby with Down syndrome, passed away because he was denied an organ transplant. Zion’s story is not only devastating, it is unacceptable. This legislation would honor Zion’s life and help ensure that what happened to him never happens to anyone else.”
“People with disabilities are too often overlooked and in being denied full inclusion can encounter hurdles that many of us cannot even begin to imagine, including when it comes to receiving the life-saving care of an organ transplant," said Senator Hassan. “All individuals should be guaranteed quality of care, and that’s something I’ll always fight for. I’m proud to help lead this effort with Senator Rubio to make sure that discrimination has no place in medical care."
NDSS has resources available to assist those seeking to prevent discrimination in organ transplantation against people with disabilities. For more information, please visit https://bit.ly/3ko22tN.
The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities. Founded in 1979, NDSS supports and advocates for the Down syndrome community by focusing on three key areas of programming: Resources & Support, Policy & Advocacy and Community Engagement. Within these focus areas NDSS engages in various activities, events and programs on topics that are critical to our community such as federal and state advocacy and public policy, health and wellness, education and employment. NDSS creates resources to support individuals with Down syndrome, their families and caregivers across the lifespan and hosts awareness and engagement events throughout the country including the National Buddy Walk® Program, the Times Square Video presentation and New York City Buddy Walk®, Racing for 3.21 on World Down Syndrome Day, Run for 3.21, DC Golf Outing, the annual NDSS Gala & Auction and various other events. Visit www.ndss.org for more information about NDSS.