191.117.  Lori Zena Baker Act — sickle cell standing committee, members, duties — reports. — 1.  This section shall be known and may be cited as the "Lori Zena Baker Act".

  2.  There is hereby established in the department of health and senior services a "Sickle Cell Standing Committee" as a subcommittee of the Missouri genetic advisory committee.  The committee shall consist of the following members:

  (1)  One member who is a licensed physician with experience in the diagnosis and treatment of sickle cell disease and who shall serve as chair of the committee;

  (2)  One member who has sickle cell disease or is a family member of a person with sickle cell disease;

  (3)  One member with expertise in sickle cell disease research;

  (4)  One member from a leading sickle cell disease organization;

  (5)  One member with expertise in minority health; and

  (6)  One member from each of the hemoglobinopathy center that contracts with the department.

  3.  The members of the committee shall be appointed by the director of the department of health and senior services.  Members shall serve on the committee without compensation or reimbursement for expenses incurred.

  4.  The committee shall:

  (1)  Assess the impact of sickle cell disease on urban communities in the state of Missouri;

  (2)  Examine the existing services and resources addressing the needs of persons with sickle cell disease; and

  (3)  Develop recommendations to provide educational services to schools on the traits of sickle cell disease and its effects.

  5.  The committee shall include an examination of the following in its assessment and recommendations required under subsection 4 of this section:

  (1)  Trends in state sickle cell disease populations and their needs, including, but not limited to, the state's role in providing assistance;

  (2)  Existing services and resources; and

  (3)  Needed state policies or responses, including, but not limited to, directions for the provision of clear and coordinated services and supports to persons living with sickle cell disease and strategies to address any identified gaps in services.

  6.  The committee shall hold a minimum of one meeting at three urban regions in the state to seek public input.

  7.  The committee shall submit a report of its findings and any recommendations to the general assembly and the governor no later than December 31, 2027.

  8.  After December 31, 2027, the committee shall continue to meet at the request of the chair and at a minimum of one time annually for the purpose of continuing the study of sickle cell disease in this state, the impact of the committee recommendations, and to provide an annual supplemental report on the findings to the governor and the general assembly.