5357L.01I                                                                                                                                                  D. ADAM CRUMBLISS, Chief Clerk



To amend chapter 191, RSMo, by adding thereto one new section relating to a sickle cell disease task force.

Be it enacted by the General Assembly of the state of Missouri, as follows:

            Section A. Chapter 191, RSMo, is amended by adding thereto one new section, to be known as section 191.117, to read as follows:

            191.117. 1. There is hereby established in the department of health and senior services a "Sickle Cell Disease Task Force". The task force shall consist of nineteen members, as follows:

            (1) The lieutenant governor or his or her designee, who shall serve as chair of the task force;

            (2) The director of the department of health and senior services, or the director's designee;

            (3) One member of the house of representatives appointed by the speaker of the house;

            (4) One member of the senate appointed by the president pro tem of the senate;

            (5) Two members who have sickle cell disease or are family members of persons with sickle cell disease;

            (6) Two members who are licensed physicians with experience in the diagnosis and treatment of sickle cell disease;

            (7) Two members with expertise in sickle cell disease research;

            (8) One member with expertise in minority health;

            (9) Three members from leading sickle cell disease organizations; and

            (10) Five members representing urban community leaders and organizations.

            2. The members of the task force, other than the lieutenant governor, members from the general assembly, and department director, shall be appointed by the governor with the advice and consent of the senate. Members shall serve on the task force without compensation.

            3. The task force 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 their effects.

            4. The task force shall include an examination of the following in its assessment and recommendations required to be completed under subsection 3 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;

            (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; and

            (4) Replacing the genetic testing and counseling program eliminated due to lack of funding. The program was an hour-long workshop provided to schools on the traits of sickle cell disease and the effects of such traits.

            5. The task force shall hold a minimum of one meeting at three urban regions in the state of Missouri to seek public input.

            6. The task force shall submit a report of its findings and any recommendations to the general assembly and the governor no later than December 31, 2010.

            7. Until December 31, 2012, the task force 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 task force recommendations, and to provide an annual supplemental report on the findings to the governor and the general assembly.

            8. The provisions of this section shall expire on December 31, 2012.