Study

Study. (a) Before July 1, 2022, and on a biennial basis thereafter, the Department, with the assistance of: (1) the Center for Minority Health Services; (2) health care providers that treat individuals with sickle cell disease; (3) individuals diagnosed with sickle cell disease; (4) representatives of community-based organizations that serve individuals with sickle cell disease; and (5) data collected via newborn screening for sickle cell disease; shall perform a study to determine the prevalence, impact, and needs of individuals with sickle cell disease and the sickle cell trait in Illinois. (b) The study must include the following: (1) The prevalence, by geographic location, of individuals diagnosed with sickle cell disease in Illinois. (2) The prevalence, by geographic location, of individuals diagnosed as sickle cell trait carriers in Illinois. (3) The availability and affordability of screening services in Illinois for the sickle cell trait. (4) The location and capacity of the following for the treatment of sickle cell disease and sickle cell trait carriers: (A) Treatment centers. (B) Clinics. (C) Community-based social service organizations. (D) Medical specialists. (5) The unmet medical, psychological, and social needs encountered by individuals in Illinois with sickle cell disease. (6) The underserved areas of Illinois for the treatment of sickle cell disease. (7) Recommendations for actions to address any shortcomings in the State identified under this Section. (c) The Department shall submit a report on the study performed under this Section to the General Assembly. (Source: P.A. 102-4, eff. 4-27-21.)