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Minutes for HB2338 - Committee on Health and Human Services
Short Title
Designating sickle cell disease awareness week and requiring KDHE to study and report on topics related to sickle cell disease.
Minutes Content for Mon, Feb 20, 2023
Linda MowBray, President & CEO, Kansas Health Care Association and Kansas Center for Assisted Living, asked for a point of privilege to introduce member of her organizations to the committee.
Scott Abbott, Revisor of Statute, provided an overview of HB2338.
Kevin Wake, President, Uriel E. Owens Sickle Cell Disease Association of the Midwest, provided testimony on HB2338 (Attachment 1). Sickle cell disease is a genetic blood disorder that affects over 100,000 patients in the US and over 700 Kansans. 1 in 13 African Americans are estimated to be trait carriers of this disease, meaning that the potential to pass this on to children is great. Sickle cell causes a person's red blood cells to be shaped like a crescent moon or a banana instead of being round. These cells also are rigid, sticky, and only live for about 10-20 days instead of the typical 120-day lifespan of normal cell. Sickle cells can't carry the appropriate oxygen throughout the body. The shape of these cells also causes the cells to not flow nicely throughout the body. These cells will often coagulate in the body called occlusions and cause the hallmark symptom that patients experience, and that is severe pain. This pain often requires opioid medication to control. Patients can also have organ and tissue damage wherever blood flows, which is everywhere throughout the body. Mr. Wake provided his personal experiences with sickle cell disease. Over 95% of children with sickle cell now survive to adulthood due to improved treatments for kids and coordinated care model for peds. Sickle cell disease is now one of 34 tests to be screened on newborn screening panels allowing for identification at birth and referred to treatment much sooner. Adults are often lost in the health system as they transition from pediatric care to adult care. The bill will create awareness for the disease as it establishes the 3rd full week of September as Sickle Cell Awareness Week. The bill will also be proactive in reviewing available treatments and better prepare the state in providing those treatments. A brochure with additional information about sickle cell was provided within the testimony.
The following provided written only testimony in support of HB2338:
Alyson Dalrymple, Deputy Director for the Bureau of Family Health, KDHE Bureau of Family Health (Attachment 2)
The hearing for HB2338 was closed.
Without objection the committee worked HB2338.
Representative Eplee motioned and Representative Ruiz seconded to pass out HB2338 favorable. Motion passed.
