Advocates say that inequalities persist in the health care system, more than 30 years after the Americans with Disabilities Act was passed. This federal law prohibits discrimination on the basis of a person’s disability.
A 2019 report by the National Council for Disability states that “the lives and dignity of persons with disabilities continue being devalued in medical decisions-making.” An 2008 study on pediatric transplants showed that 85% of transplant centers across the country considered children’s neurodevelopmental delays when adding them to the list.
This list currently has over 100,000 people, and is still waiting for organs.
Michelle and Tom Kulczewski were behind Wisconsin Act 113, also known as Malix’s Law, which was signed into law in December by Governor Tony Evers.
“We knew that he had a defect in his heart from birth. In a Zoom interview, Tom Kulczewski said that he knew he would most likely be born with Down syndrome. “Down syndrome didn’t really matter to us. We were very, very concerned about him heart.”
Malix was diagnosed with heart failure one year after her birth. The Kulczewskis were presented with three options when they consulted their doctor: nothing, corrective surgery or the most risky — a complete repair.
“I felt we were missing something so I asked the doctor if he could do a heart transplant. Kulczewski stated that the answer was both puzzling, and alarming.
Their son was not eligible for a heart transplant. According to the doctor, the reason was quality of life. This, along with the ability to follow post-operative treatment was one of the criteria for eligibility under Wisconsin law.
It wasn’t Wisconsin.
Arthur Caplan, head of the Division of Medical Ethics, NYU Grossman School of Medicine tells CBS News that transplants for adults with disabilities are possible. Children are more likely to receive transplants than adults because they have a very limited supply of organs.
He said, “That’s where quality of life is much more controversial.” “Quality is being able interact with others, not constantly in pain, and to perform minimal functions.
Caplan stated, “Say that you are in an irreversible coma or you cannot communicate.” “The transplant will not fix that, it’s only going to prolong life. But, there will be more suffering.
It was unimaginable for the Kulczewskis to believe that Malix lived a less fulfilling life than their other three children without Down syndrome.
“He has Down syndrome. So what?” Tom Kulczewski said. ” He could be a CEO one day. He has the freedom to do what he likes. He is not my limit.
The riskiest option of all three was chosen by the couple, but it also offered the greatest reward: a complete repair.
Michelle Kulczewski stated that “they did save Malix’s lives and did an incredible job.” Malix, now five years old is “a determined youngster that brings joy to all he meets.”
The couple remained determined to amend the law even years after their surgery.
“It was something we just knew, really, right there and then that we had to do for Malix and others.” Michelle Kulczewski said. “Just to help change that language so that no one ever has to hear these words.”
In 2020, they began to work with John Jagler and Mark Born of Wisconsin. One year later, the Wisconsin Assembly and Senate unanimously passed their bill.
Many families are faced with the fear of death from denial. After being denied a test due to his Down syndrome, Daniel Kirwan succumbed to renal failure in 2015.
Kirwan-Haynie said, “After my brother died, it didn’t sit well for me that he wasn’t given the chance to see if there was a possibility he could be a candidate for transplant.” “Everybody should be able to see.”
She claimed that his kidney failure was due to an old medication he received.
Kathleen Kirwan-Haynie said that despite suffering from kidney disease for 20 years, he still volunteer five days per week at a local nursing facility. “He was, in my opinion — and in the minds of many people — literally an angel on Earth. He taught us all the right way to live.
She was used to being the executive director for a non-profit and advocating for people who couldn’t. She thought of her brother when she was diagnosed with kidney disease, which doctors said could be treated.
She said, “Our family has suffered such heartbreak watching Daniel suffer so many decades and now gone from sight.” “I thought it was time to act so other families and individuals have the chance and the hope they deserve.”
It was called Daniel’s Law and it was passed in 2021. It was adopted on September 1, 2021, the same day Kirwan-Haynie was born.
She said, “It was the last birthday gift from my brother. It just reassurance me that you did it, you did what was right and, you know. he and i did it together.” “In his life, I was his voice. … I feel extremely honored and blessed to still be his voice, even after his death.”
With the passage of the Charlotte Woodward Organ Transplant Discrimination Act, families across the country hope that the protections in 30 states will be made federal. This national bill is crucial for giving people like her daughter the rights she needs.
Doctors told Lainey Morrow, her daughter Lila, who was born with Down syndrome, that Lila wouldn’t be eligible for a transplant because of her disability.
While her 14-month-old daughter was undergoing open heart surgery, all she was told to do by doctors was to pray. She said, “I don’t believe I’ve ever felt so helpless as a parent.”
Seven years after her successful surgery, Lila still feared that she would not be allowed another chance at a transplant. This fear inspired Arkansas to pass “Lila’s Law” last year.
These words are not what I want to hear as a mother. “I don’t want her to hear she doesn’t enjoy equal health care rights… she may die because of that,” Lainey Morrison told CBS News. “And that’s something I do not want any family members or individuals in the United States to hear.”
A national law, which would be passed, would provide protections for all people with disabilities, rather than the current state-by-state system. Advocates say this is particularly important because organs and people are regularly moving across states to reach transplant centers.
Charlotte Woodward, the law’s nameake, is currently a student at George Mason University, where she is studying sociology. She is also an associate in community outreach at the National Down Syndrome Society.
She explained to CBS News that she was not only born with Down syndrome but also had a congenital defect in her heart. She has had four heart surgeries. “I would faint from time to time because my heart could not keep up with my growing body.”
Her doctor recommended that she have a heart transplant. Woodward said she was grateful to her doctors and her donor, but now she recognizes how unique her experience was.
She said, “I didn’t know there was such a huge disparity when my heart transplant was done and I found out about it after I started this job at NDSS.”
Woodward shared facts about Down syndrome in a TikTok, which went viral. She listed the discrimination that people with disabilities face. These included being paid a sub-minimum wage and not being able get married.
These limitations shocked viewers: She said, “The response was outrage.”
The bill that Charlotte introduced, by Senators Marco Rubio, Katie Porter, and Representative Jaime Herrera Beutler, would change one of these limitations. It would ban discrimination against persons with disabilities in organ transplant systems.
This proposal would provide clarity to health care providers on how disability should have been considered in an individual treatment plan and allow access to expedited reviews by both the Office of Civil Rights at Department of Health and Human Services and in federal district courts.
This legislation could provide better data about how people with disabilities are treated in health care. It boils down to a lack of information , particularly in the medical field where data can quickly become obsolete.
Bartholomew Devon (Senior Director of Public Policy, NDSS) stated that discrimination is not always an act based on malice. It’s not always bad intent.
Transplantation can be a complex process that involves many steps. Consider a doctor’s visit. Accessible support systems might not be available for people with disabilities. As with all patients, they may need different levels of technology comfort.
He said, “In a pandemic situation where it’s unsafe to be physically present for many things,” “A particular challenge for a specific group of people will become a greater challenge than it would otherwise have been.”
Devon stated, “If you don’t have a doctor appointment, maybe it won’t be possible to get that referral to get onto the list to receive a transplant.” “Maybe people at higher risk of COVID like people with disabilities, won’t be able to go to the initial doctor’s visit.”
Bioethicist Caplan agreed to many points made by the law.
Caplan stated that people with disabilities have struggled to get accepted into transplant center programs over the years. This is mainly because of intellectual disabilities.
He agreed that every parent should be informed if there is a chance of a transplant for their child. This should not be withheld. Parents should have the right to appeal the decision. This could be done through an ethics committee that includes people with disabilities.
He said that each hospital in the country decides who it will take before placing potential recipients on the national list for organ transplants. This decision would not change under Charlotte’s Law.
“America has no right to health insurance. Congress can’t make any hospital accept anyone as a patient. Caplan stated that there is no right to be there – only at the emergency department until you are stable. “If you want this law to be meaningful, then you have to create better rights to health care for everyone.”
“I understand what the disability community wants, but they are doing it against the backdrop of each individual hospital and, by the side, each individual physician — have the right to say no with out penalty.”
Devon points out that, while the bill does not constitute a complete overhaul of organ transplantation ecosystems, patients with disabilities as well as healthcare providers can learn the best and worst ways to allow disability to be part of the organ transplant conversation.
He said that “it provides an opportunity for individuals with disabilities, who believe they’ve been discriminated in the process, to have expedited access legal recourse.” In an email.