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Minutes for SB364 - 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 Mon, Feb 24, 2020
Chairman Suellentrop opened the Hearing on SB364.
Heather Smith testified as a proponent for SB364. She stated that SB364 amends the existing program statutes, naming the Kansas newborn screening act, updating outdated terminology, and increasing funding capitations placed under the medical assistance fee fund to support the appropriate resources necessary to conduct a quality, effective, and efficient newborn screening program. Currently, the Kansas Newborn Screening Program screens for a total of 32 conditions; however the current U.S. Department of Health and Human Services Recommended Uniform Screening Panel includes 35 conditions. Implementing screening of the remaining three conditions would put Kansas as only the sixth state in the nation to screen for all conditions on the core panel. SB364 requests that the funding capitation be raised to allow for programmatic growth, future expansion and the flexibility to meet the needs of the families served through the screening program. (Attachment 1) (Attachment 2)
Karey Padding stated in her proponent testimony that newborn screening saves lives and can drastically change the trajectory of life for babies and their families. SB364 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. (Attachment 3)
Paloma Juarez, in her proponent testimony of SB364 shared the story of her son, Vaun Sanford Way and his diagnosis of Pompe's disease through the Missouri Newborn Screening at nine days old. The difference between nine days and even 30 days are huge in terms of treatment for Pompe's disease. Not only did early diagnosis keep Vaun alive, it has impacted his quality of life in a positive way. (Attachment 4)
Questions were asked by committee members.
Written only, proponent testimony was submitted by:
Dr. Michael Lewis, The University of Kansas Health System (Attachment 5)
Chad Austin, Kansas Hospital Association (Attachment 6)
Dr. Dena Hubbard, American Academy of Pediatrics (Attachment 7)
Lin Fennell, RN (Attachment 8)
Kim Reynolds, Heart Mom and CHD Screening Advocate (Attachment 9)
Melinda Lavon, Kansas Midwives Alliance (Attachment 10)
Kenneth Hobby, Cure SMA (Attachment 11)
Chairman Suellentrop closed the hearing on SB364.
