Individuals with disabilities in Texas faced potential denial of life-saving organ transplants due to their disability. Midlander Kathleen Kirwan-Haynie helped champion Daniel's Law, or House Bill 119, a bill designed to protect the right of disabled individuals to access the organ transplant list. The legislation took effect in January 2022.
Kirwan-Haynie’s brother, Daniel Kirwan, was born with Down Syndrome and died in 2015 after being denied placement on the organ donation list, according Kirwan-Haynie.
“Daniel's kidney failure stemmed from outdated medication rather than any pre-existing health conditions", said Kirwan-Haynie. “He was incredibly healthy, despite struggling with kidney failure for 20 years and enduring the agony of dialysis for years. He selflessly volunteered five days a week at a nursing home and he truly epitomized the essence of living."
“Daniel passed from renal kidney failure after being refused an organ transplant test due to his Down Syndrome and Texas' organ transplant regulations,” Kirwan-Haynie told Midland Times. “It was deeply unsettling to me that he was never afforded the opportunity to see if he could have been a candidate for a transplant and ultimately lead a fulfilling life. Every individual deserves that chance."
Kirwan-Haynie serves as the Executive Director of Senior Life Midland, a nonprofit organization in Midland. She advocates for the rights of others, a skill that she said aided her in pushing for organ transplant equality.
“I began researching organ transplant rights for disabled individuals in Texas and drew from my own experience battling kidney disease from an autoimmune disease,” she said. Her focus shifted to her late brother Daniel, seeking ways to honor his memory by supporting families in Texas.
In May 2021, Kirwan-Haynie testified before the Texas House of Representatives in support of Daniel’s Law, a bill she contributed to alongside West Texas’ local State Representative Brooks Landgraff. The legislation provides safeguards against discrimination in medical settings for people with disabilities.
Daniel was a lifelong Midlander and “a familiar face in the community.” He was known for his participation in city races and triathlons and often seen running the streets of Midland, according to Kirwan-Haynie. Despite being born with Down syndrome, “Daniel adamantly refused to let it impede his accomplishments. Daniel confronted adversity head-on,” said Kirwan-Haynie.
Since Daniel's passing, Kirwan-Haynie has pondered “the ethical issues surrounding his denial on the transplant list.”
"Many individuals with disabilities lead rich lives and should not encounter discrimination based on their disabilities. With April being National Donate Life Month, it’s a good reminder that life matters." said Kirwan-Haynie.
The National Down Syndrome Society is collaborating with Kirwan-Haynie, families, Congress, and State Representatives to advocate for the passage of HR 2706 in Congress, also known as the Charlotte Woodward Act. The bill is currently pending in the U.S. House of Representatives.
For more information about Daniel's Law, visit the Capitol of Texas website at https://capitol.texas.gov/tlodocs/87R/billtext/html/HB00119F.htm . For more information about the Charlotte Woodward Act, visit https://www.congress.gov/bill/118th-congress/senate-bill/1183].
