Missouri health committee would study sickle cell disease

The health department director would appoint a standing committee within the state's genetic advisory committee. The committee would include a sickle cell physician, a person with the disease or a family member, and representatives or experts in research, sickle cell organizations, minority health, and contracted hemoglobinopathy centers. Members would serve without pay or repayment for expenses.

The committee would study sickle cell disease, seek public input, and recommend school education about its traits and effects. The study would focus on the disease's impact on Missouri's urban communities and services and resources for people with sickle cell disease. The committee would examine population trends and needs, existing services, possible state policies, and gaps in support. It would hold at least one public input meeting in each of three urban regions and send its findings and recommendations to the General Assembly and governor by December 31, 2027.

The committee would continue studying the disease and report to state leaders each year. The committee would consider the effect of its recommendations and report its findings to the governor and the General Assembly. The chair could request meetings in addition to the required annual meeting. After December 31, 2027, the committee would meet at least once a year and submit annual supplemental reports.