(410 ILCS 460/131-25)
Sec. 131-25. 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 |
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(3) individuals diagnosed with sickle cell disease;
(4) representatives of community-based organizations
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| that serve individuals with sickle cell disease; and
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(5) data collected via newborn screening for sickle
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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
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| individuals diagnosed with sickle cell disease in Illinois.
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(2) The prevalence, by geographic location, of
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| individuals diagnosed as sickle cell trait carriers in Illinois.
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(3) The availability and affordability of screening
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| services in Illinois for the sickle cell trait.
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(4) The location and capacity of the following for
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| the treatment of sickle cell disease and sickle cell trait carriers:
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(A) Treatment centers.
(B) Clinics.
(C) Community-based social service organizations.
(D) Medical specialists.
(5) The unmet medical, psychological, and social
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| needs encountered by individuals in Illinois with sickle cell disease.
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(6) The underserved areas of Illinois for the
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| treatment of sickle cell disease.
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(7) Recommendations for actions to address any
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| shortcomings in the State identified under this Section.
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(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.)
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