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Minutes for HB2343 - Committee on Children and Seniors

Short Title

Ensuring nondiscrimination of organ transplants on the basis of disability.

Minutes Content for Thu, Feb 16, 2017

The Chair opened the hearing for HB 2343. Revisor Kyle Hamilton briefed the Committee on the bill; he stated that the bill ensures an individual with disabilities is not denied access to organ transplant based on his/her disability. He explained that if a disabled person meets eligibility requirements, he/she must be considered on the same basis as any other person; a violation would allow the affected individual injunctive relief (Attachment 1).

Representative Erin Davis related experiences with her nephew regarding a proposed kidney transplant. She spoke in support of HB 2343 noting that it would provide more protection for the disabled. Representative Davis noted emphatically that the legislature has this opportunity to do what is good for the most vulnerable persons with disabilities in our state.

Sara Long, parent of a daughter with a heart condition, speaking as a proponent for the bill, cited a Stanford University study showing that 71% of heart programs routinely assess neurodevelopmental status in determining eligibility status. She expressed concern that having Down Syndrome could deny her daughter an opportunity to extend her life should the need arise (Attachment 2).

Sarah Meitner, parent of a son with Down Syndrome and representing Northwest Kansas Down Syndrome Society, testified in support of the bill as a means of ensuring that her son is not denied access to critical health care because of his disability (Attachment 3).

Jawanda Mast, Manager, Grassroots Advocacy for the National Down Syndrome Society, and parent of a 17-year-old daughter with Down Syndrome, spoke in support of the bill. She noted that four other states have passed similar legislation. She explained that the bill does not prohibit health-care providers from including a person's disability in their diagnoses; it rather emphasizes that the disability must be medically significant and that the patient must have a post-transplant network (Attachment 4).

Amy Allison, Executive Director, Down Syndrome Guild of Greater Kansas City, speaking in support of the bill, said that although individuals with Down Syndrome may have a variety of health issues, that fact in no way obviates their rights for equitable health-care decisions. HB 2343 provides such assurances (Attachment 5).

Eric Harkness, President, National Alliance on Mental Illness, supported the bill by citing evidence to show why the bill is needed--that transplant centers and physicians frequently denied a life-saving procedure based on their mental condition (Attachment 6).

Rocky Nichols, Executive Director, Disability Rights Center of Kansas (a private nonprofit corporation focused on protecting the legal rights of Kansas citizens with disabilities), testified in support of the bill. He outlined the benefits of the bill, cited clear evidence of discrimination based on an individual's disability, and stated that no scientific data exists to show negative transplant outcomes for those with disabilities (Attachments 7) and (Attachment 8).

Written Only testimony was submitted by:

Sara Hart Wier, MS.,President, National Down Syndrome Society (Attachment 9).

Rebecca McCaulley, Parent, Wichita, Kansas (Attachment 10).

Kathy Ostrowski, Legislative Director, Kansans for Life (Attachment 11)


The Chair closed the hearing on HB 2343 and opened the hearing on HB 2304.