House Bill 787

AN ACT TO CREATE THE CONCERN FOR CHILDREN WITH SICKLE CELL DISEASE TASK FORCE; TO PROVIDE FOR THE MEMBERSHIP OF THE TASK FORCE; TO SET FORTH THE DUTIES OF THE TASK FORCE; AND FOR RELATED PURPOSES.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MISSISSIPPI:

SECTION 1. (1) The Legislature finds that Sickle Cell Disease is a genetic disorder of the blood that affects more than seventy-two thousand (72,000) individuals in the United States.

(2) It is the intent of the Legislature that this act establish an aggressive and focused strategy to identify, treat and accommodate the needs of those individuals with Sickle Cell Disease and that of their families.

SECTION 2. (1) The Concern for Children with Sickle Cell Disease Task Force is created to study and make recommendations to the Mississippi Legislature regarding: the growing incidence of Sickle Cell Disease; how to identify, treat and accommodate the needs of individuals with Sickle Cell Disease and their families that provide treatment; and ways to improve the delivery and coordination of state services provided to individuals with Sickle Cell Disease. The task force shall be composed of the following members:

(a) Three (3) persons who are the parents of children with Sickle Cell Disease, with one (1) of those persons to be appointed by the Governor, one (1) to be appointed by the Lieutenant Governor, and one (1) to be appointed by the Speaker of the House;

(b) One (1) person who is a member of the governing body of a school district, to be appointed by the State Superintendent of Public Education;

(c) One (1) person who represents the State Department of Education, to be appointed by the State Superintendent of Public Education;

(d) One (1) person who is a representative of the State Department of Health, to be appointed by the executive director of the department;

(e) One (1) person who is a representative of the Sickle Cell Anemia Association, to be appointed by the executive director of the association;

(f) One (1) person who is a representative of the Mississippi Medical and Surgical Association, to be appointed by the executive director of the association;

(g) One (1) person who is a representative of the Mississippi State Medical Association, to be appointed by the executive director of the association;

(h) One (1) person who is a representative of the University of Mississippi Medical Center and who provides medical or other services to individuals with Sickle Cell Disease, to be appointed by the Vice Chancellor of the University of Mississippi Medical Center;

(i) One (1) person who is a Mississippi pediatrician engaged in the private practice of medicine and who provides treatment to individuals with Sickle Cell Disease, to be appointed by the Vice Chancellor of the University of Mississippi Medical Center; and

(j) One (1) person who is a licensed nurse engaged in the practice of nursing, to be appointed by the Executive Director of the Mississippi Nurses Association.

(2) The task force shall:

(a) Review the best practices of other states with regard to educational, medical and support services provided to individuals diagnosed with Sickle Cell Disease and identify the best practices of other states;

(b) Review the standard of services provided by local Mississippi school districts and support programs to individuals diagnosed with Sickle Cell Disease and their families, identify any additional potential funding sources for school districts, and identify guidelines for measurable educational and instructional goals that can be used by members of the education community for serving children with Sickle Cell Disease;

(c) Assess the medical availability of services currently provided for early screening, diagnosis and treatment of Sickle Cell Disease and provide recommendations for enhancing medical services;

(d) Identify the role of higher education in developing a workforce in Mississippi possessing the skills necessary to assist individuals with Sickle Cell Disease in medical, educational and vocational efforts, or in providing additional services associated with Sickle Cell Disease;

(e) Evaluate and identify any and all additional relevant information and make legislative recommendations regarding the development and implementation of a continuum of educational and medical services for individuals with Sickle Cell Disease; and

(f) File a report with those standing committees of the Mississippi State Legislature and with those state agencies having jurisdiction over specific recommendations of the task force, not later than December 1, 2010.

(3) The task force shall hold its first meeting not later than April 1, 2010, with the date, time and location of the meeting to be designated by the Governor. At that first meeting, the task force shall elect from among its membership a chairman, vice chairman and any other officers determined to be necessary, and shall set the date, time and location of its next meeting.

(4) The State Department of Health shall provide the staff and other support necessary for the Concern for Children with Sickle Cell Disease Task Force to perform its duties.

SECTION 3. This act shall take effect and be in force from and after its passage.