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Minutes for SB155 - Committee on Public Health and Welfare
Short Title
Expanding newborn screening services and increasing transfers from the medical assistance fee fund to the Kansas newborn screening fund.
Minutes Content for Thu, Mar 3, 2022
Chairperson Hilderbrand opened the hearing on SB155.
Jenna Moyer, Staff Revisor gave an overview of the bill.
Drew Duncan testified as a proponent. He stated that SB155 would rename KSA 65-180, the newborn screening act, updated outdated terminology, and increase funding capitations placed on the program's sole funding source, the medical assistance fee fund pursuant, to KSA 40-3236. With the expansion of five conditions over the past five years and recommendation for Kansas to remain up-to-date with the uniform screening pane, the panel will be underfunded and unable to meet growing needs. (Attachment 1)
Karey Padding gave testimony in support of SB155. She shared the story of her son who is growing, thriving and healthy because of an early diagnosis and treatment.SB155 allows for all newborn Kansans to continue having the advantage of early diagnosis of metabolic and genetic diseases which greatly benefit from early treatments and interventions and asked to consider increasing the capitation to continue to meet the needs of the many families served through this screening program. (Attachment 2)
Adrienne Olejnik spoke in support of SB155 which increases the Newborn Screening Program's (NSP's) capitation limit from $2.5 million to $5.0 million, as well as update outdated terminology in statute. Making this change doesn't necessarily mean that the NSP's budget will be increased to $5 million. Instead, it gives the program flexibility to respond in the future. (Attachment 3)
Kirsten Finn, in her proponent testimony shared her son's "by chance" diagnosis of Adrenoleukodystrophy, or ALD. ALD affects one in roughly 17,000 births and is a relentless and progressive neurodegenerative illness. The only treatment know to halt the progression of this disease is a blood and marrow transplantation. The window for being eligible for treatment is exceedingly narrow and a later transplant can accelerate rather than halt the disease. (Attachment 4)
Travis and Deanna McMillan testified in support of SB155 by telling the story of their son's diagnosis at five years old and his journey with ALD. Earlier detection of devastating and treatable conditions like ALD leads to more information, which should contribute to better care, and being placed with the correct experts for the child. Currently there son is asymptomatic and they haven't had to prepare for a blood marrow transplant with him yet. (Attachment 5)
Troy Reimer gave testimony in support of SB155 by telling about his son's diagnosis of ALD at the age of seven. He is advocating for including ALD in the newborn screening regimen in Kansas. Currently, 27 states have already added ALD to their newborn screening. Unless there is a known family history for the condition, it will go undetected. When symptoms do occur, usually between the ages of four to 10, it is often too late for effective treatment. (Attachment 6)
They took questions from the committee members.
Proponent, written only testimony was submitted by:
Dr. Dena Hubbard, Kansas Chapter, American Academy of Pediatrics (Attachment 7)
Melissa Rooker, Kansas Children's Cabinet & Trust Fund (Attachment 8)
Terri Steinlage, Private Citizen (Attachment 9)
Tara Mays, Kansas Hospital Association (Attachment 10)
Robert J. Cooper, Executive Director, KCDHH (Attachment 11)
Jennifer Glannon, MD, Chair, Kansas Newborn Screening Advisory Council (Attachment 12)
Erin Schuweiler, Sound START Coordinator, Kansas School for the Deaf (Attachment 13)
Chairperson Hilderbrand closed the hearing on SB155.
Chairperson Hilderbrand called for a motion on the confirmation of Janet Stanek for Secretary of Kansas Department of Health and Environment. Senator Pettey made a motion for confirmation for the appointment of Janet Stanek for Secretary of Kansas Department of Health and Environment, with a second by Senator O'Shea. Discussion followed. Senator Thompson made a substitute motion for the appointment to not be recommended. The motion died for lack of second. Senator Erickson made a substitute motion to pass confirmation out of committee without recommendation, with a second by Senator Baumgardner. Discussion followed. On a voice vote of aye, the motion to pass out of committee with recommendation carried, with Senators Pettey, O'Shea and Holscher voting no.
Chairperson Hilderbrand adjourned the meeting at 9:25 a.m. The next scheduled meeting is March 9, 2022.
