They say their children are being denied transplants because of their disabilities. A new federal law may help change that.
A patient with disabilities can be denied life-saving organ transplants because of those disabilities, and parents often fear the worst. Families have won protections in many states — including 14 in the last year.
But more than three decades after the Americans with Disabilities Act — which prohibits discrimination based on a person's disability — became federal law, advocates say inequities persist in health care.
According to a 2019 report from the National Council for Disability, "the lives of persons with disabilities continue to be devalued in medical decision-making," and a widely cited 2008 study involving pediatric transplants found 85% percent of organ transplant centers around the country considered a child's neurodevelopmental delay when deciding to add them to the list.
That list now has more than 100,000 people on it, waiting for a limited supply of organs.
Tom and Michelle Kulczewski were the driving force behind Wisconsin Act 113 — also known as Malix's Law — signed into law by Governor Tony Evers in December.
"We knew he had a heart defect going into birth. We also knew he would most likely have Down syndrome," Tom Kulczewski told CBS News in a Zoom interview. "Down syndrome never really mattered to us — we were very, very concerned about his heart."
A year after being born, Malix began going into heart failure. When the Kulczewski family consulted their doctor, they had three options: do nothing, corrective surgery, or the riskiest — a full repair.
"I thought we were missing something, so I asked the doctor, 'What about a heart transplant?' And the response we got was a little puzzling and alarming," Kulczewski said.
Their son did not qualify for a heart transplant. The doctor told them it was due to quality of life, which along with ability to comply with post-operative treatment, was among the considerations for eligibility under Wisconsin law at the time.
But it wasn't just Wisconsin.
Arthur Caplan, the head of the Division of Medical Ethics at NYU Grossman School of Medicine, tells CBS News that adults with disabilities will likely not be excluded from getting transplants. It is more likely with children, because organs for children are exceedingly rare.
"That's where the 'quality of life' issue is much more controversial," he said. "Quality of life — it's being able to interact, to not be constantly in pain, to be able to do minimal functions."
"Say you are in a permanent coma, or you can't communicate," Caplan said. "The transplant won't fix that — it's just going to extend life. But there's going to be a lot more suffering."
The Kulczewskis found it unthinkable that Malix had a lower quality of life than their three other children who didn't have Down syndrome.
"He has Down syndrome, so what?" Tom Kulczewski said. "He can be a CEO someday. He can do whatever he wants. I'm not going to limit him — and others shouldn't limit him either."
The couple chose the riskiest of their three options, which also had the greatest reward: a full repair.
"They did save Malix's life and they did an amazing job," Michelle Kulczewski said. Now five years old, Malix is "a determined young man that brings joy to everyone that he meets."
Years after the surgery, the couple was still determined to change the law.
"It was just something that we knew — really, right then and there — in our hearts that we needed to advocate for Malix and for others." Michelle Kulczewski said. "Just to help to change that language so that nobody ever has to hear those words."
They began working with Wisconsin legislators Mark Born and John Jagler in 2020. The Wisconsin Assembly and Senate passed their bill unanimously a year later.
That fear of death due to denial is real for many families. Daniel Kirwan died from renal kidney failure in 2015 after he was denied a test — due to his Down syndrome.
"After my brother passed away, it just didn't sit well with me that he was never given the opportunity to see if he could have been a candidate for a transplant," said Kirwan-Haynie. "Everybody should have the opportunity to see."
She said his kidney failure was the result of an outdated medication given to him.
"He struggled with kidney failure for about 20 years and still volunteered five days a week at a local nursing home," Kathleen Kirwan-Haynie told CBS News. "He, in my mind — in a lot of people's minds — was literally just an angel on earth. He just really kind of taught us all how we should live too."
As the executive director of a nonprofit, she was used to advocating for those who couldn't. But when she became ill with kidney disease that doctors told her was treatable, she immediately thought of her brother.
"Our family has endured such heartbreak in watching Daniel suffer so many years and now gone from our sight," she said. "And I thought, it's time to take action so that other individuals and families have the hope and have the fair chance at life they deserve."
The result was Daniel's Law, passed in 2021. It went into effect September 1, 2021 — the same day as Kirwan-Haynie's birthday.
"It was that last final birthday gift from my brother, you know, just reassuring me, 'You did it, you did the right thing and, and you know, he and I did it together," she said. "In life, I was his voice. … And I feel very honored and blessed that even after his life ended, I can still be his voice."
Families across the country are hoping that protections passed in 30 states will become federal law with the passing of the Charlotte Woodward Organ Transplant Discrimination Act. For one mother, this national bill is paramount in giving people like her daughter the rights they need.
When her daughter Lila, born with Down syndrome, was diagnosed with having holes in her heart — doctors told Lainey Morrow that Lila would not be eligible for a heart transplant due to her disability.
All the doctors told her to do was pray as her then-14-month-old daughter underwent open heart surgery. "I don't think I've ever felt as helpless as a parent," she said.
Seven years after a successful surgery, there was still that lingering fear Lila would be denied another chance for a transplant if she ever did need it. That fear led to the push for "Lila's Law," which passed last year in Arkansas.
"As a mother, I don't ever want to hear those words again. I don't want to hear that she doesn't have equal health care rights … she may not live because of that," Lainey Morrow told CBS News. "And I don't want any other family or person in the United States to ever hear that either."
If passed, a national law would extend protections for everyone with a disability, as opposed to the state-by-state framework that now exists. This is especially important as both people and organs are moving across state lines regularly en route to organ transplant centers, according to advocates.
The proposed law's namesake, Charlotte Woodward, is a student at George Mason University studying for her degree in sociology. She is also a community outreach associate at the National Down Syndrome Society.
"When I was born, not only was I born with Down syndrome, I was also born with a congenital heart defect," she told CBS News, adding that she had four heart surgeries. "As I grew, my heart couldn't keep up with the rest of my body, so I would have fainting spells."
This pushed her doctor to recommend her for a heart transplant. Woodward says she is grateful to her doctors, as well as her donor and their family, but she now recognizes how unusual her experience was.
"I didn't know that was such a big disparity when I had my heart transplant and I learned about it afterwards when I got this job at NDSS," she said.
In a TikTok that went viral, Woodward listed facts about having Down syndrome that detailed the discrimination people with disabilities face, such as being paid sub-minimum wage, not being able to get married or risk losing her health insurance and support — and of course, not qualifying for organ transplants.
@ndssorg We don’t get it either! #downsyndrome #learnontiktok ♬ 아무노래(Any song) - kozico0914
Viewers were stunned at these limitations: "The response was outrage," she said.
But Charlotte's bill, introduced by Representatives Jaime Herrera Beutler and Katie Porter and Senators Marco Rubio and Maggie Hassan, aims to change just one of those limitations: It would prohibit discrimination against people with disabilities in the organ transplant system.
The proposal would offer health care providers clarity on how disability should be considered in an individualized treatment plan and provide access to expedited reviews through both the Office of Civil Rights at the Department of Health and Human Services and in a federal district court.
The legislation could lead to better data on how people with disabilities are treated, especially when it comes to health care. It comes down to a lack of information, especially in the medical field when data can become outdated quickly.
"Discrimination is not always an act of malice,"said Bartholomew Devon, Senior Director of Public Policy at NDSS. "It's not always bad intention."
Organ transplantation is a complicated process with many steps. Take, for example, a doctor's appointment. Available support systems may not work for some with disabilities — and like all patients, they may have various levels of comfort with technology.
"In a situation like the pandemic where it's not safe to be physically present for a lot of things," he said. "A specific challenge for a group of people is going to become a bigger challenge than it otherwise would have been."
"If you can't have a doctor's appointment, maybe you won't get that referral to get on the list where to get a transplant," Devon said. "Maybe the only people who couldn't go to that initial doctor's appointment are people who are more at risk for COVID, like some people with disabilities."
Bioethicist Caplan agreed with many of the points raised by the proposed law.
"Over the years, I think people with disabilities have been at a disadvantage in getting accepted to transplant center programs, mainly due to intellectual disabilities," Caplan told CBS News.
When it comes to children, he agreed every parent should know if a transplant is even a possibility — that should never be withheld. Parents should also have a way to protest the decision, such as an ethics committee with people with disabilities that considers the request from the parent or evaluates decisions for bias or discrimination.
But each hospital around the country makes its decision about who to take before putting prospective recipients on the national organ transplant list, he said, which wouldn't change under Charlotte's Law.
"There is no right to health care in America. Congress cannot make any hospital accept anybody as a patient. There's no right to be there — only at the emergency room until you're stable," Caplan said. "If this law is going to be meaningful, you must create a better right to health care for everybody."
"I know what the disability community wants to do, but they're doing it against the backdrop where each individual hospital — and, by the way, each individual doctor — has the right to say no without penalty."
But Devon notes that while the bill is not a technical overhaul of the organ transplant ecosystem, both patients with disabilities and healthcare providers can learn and understand the right and wrong ways for disability to enter into the organ transplant conversation.
"It provides a way for individuals with disabilities who believe they've faced discrimination in the process to have expedited access to legal recourse," he said in an email.
