Illinois General Assembly - Full Text of SB3107
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Full Text of SB3107  101st General Assembly


Sen. Mattie Hunter

Filed: 2/28/2020





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2    AMENDMENT NO. ______. Amend Senate Bill 3107 by replacing
3everything after the enacting clause with the following:
4    "Section 1. Short title. This Act may be cited as the
5Sickle Cell Prevention, Care, and Treatment Program Act.
6    Section 5. Definitions. As used in this Act:
7    "Department" means the Department of Public Health.
8    "Program" means the Sickle Cell Prevention, Care, and
9Treatment Program.
10    Section 10. Sickle Cell Prevention, Care, and Treatment
11Program. The Department shall establish a grant program for the
12purpose of providing for the prevention, care, and treatment of
13sickle cell disease and for educational programs concerning the



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1    Section 15. Grants; eligibility standards.
2    (a) The Department shall do the following:
3        (1)(A) Develop application criteria and standards of
4    eligibility for groups or organizations who apply for funds
5    under the program.
6        (B) Make available grants to groups and organizations
7    who meet the eligibility standards set by the Department.
8    However:
9            (i) the highest priority for grants shall be
10        accorded to established sickle cell disease
11        community-based organizations throughout Illinois; and
12            (ii) priority shall also be given to ensuring the
13        establishment of sickle cell disease centers in
14        underserved areas that have a higher population of
15        sickle cell disease patients.
16        (2) Determine the maximum amount available for each
17    grant provided under subparagraph (B) of paragraph (1).
18        (3) Determine policies for the expiration and renewal
19    of grants provided under subparagraph (B) of paragraph (1).
20        (4) Require that all grant funds be used for the
21    purpose of prevention, care, and treatment of sickle cell
22    disease or for educational programs concerning the
23    disease. Grant funds shall be used for one or more of the
24    following purposes:
25            (A) Assisting in the development and expansion of
26        care for the treatment of individuals with sickle cell



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1        disease, particularly for adults, including the
2        following types of care:
3                (i) Self-administered care.
4                (ii) Preventive care.
5                (iii) Home care.
6                (iv) Other evidence-based medical procedures
7            and techniques designed to provide maximum control
8            over sickling episodes typical of occurring to an
9            individual with the disease.
10            (B) Increasing access to health care for
11        individuals with sickle cell disease.
12            (C) Establishing additional sickle cell disease
13        infusion centers.
14            (D) Increasing access to mental health resources
15        and pain management therapies for individuals with
16        sickle cell disease.
17            (E) Providing counseling to any individual, at no
18        cost, concerning sickle cell disease and sickle cell
19        trait, and the characteristics, symptoms, and
20        treatment of the disease.
21                (i) The counseling described in this
22            subparagraph (E) may consist of any of the
23            following:
24                    (I) Genetic counseling for an individual
25                who tests positive for the sickle cell trait.
26                    (II) Psychosocial counseling for an



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1                individual who tests positive for sickle cell
2                disease, including any of the following:
3                        (aa) Social service counseling.
4                        (bb) Psychological counseling.
5                        (cc) Psychiatric counseling.
6        (5) Develop a sickle cell disease educational outreach
7    program that includes the dissemination of educational
8    materials to the following concerning sickle cell disease
9    and sickle cell trait:
10            (A) Medical residents.
11            (B) Immigrants.
12            (C) Schools and universities.
13        (6) Adopt any rules necessary to implement the
14    provisions of this Act.
15    (b) The Department may contract with an entity to implement
16the sickle cell disease educational outreach program described
17in paragraph (5) of subsection (a).
18    Section 20. Sickle Cell Chronic Disease Fund.
19    (a) The Sickle Cell Chronic Disease Fund is created as a
20special fund in the State treasury for the purpose of carrying
21out the provisions of this Act and for no other purpose. The
22Fund shall be administered by the Department.
23    (b) The Fund shall consist of:
24        (1) Any moneys appropriated to the Department for the
25    Sickle Cell Prevention, Care, and Treatment Program.



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1        (2) Gifts, bequests, and other sources of funding.
2        (3) All interest earned on moneys in the Fund.
3    Section 25. Study.
4    (a) Before July 1, 2021, and on a biennial basis
5thereafter, the Department, with the assistance of:
6        (1) the Center for Minority Health Services;
7        (2) health care providers that treat individuals with
8    sickle cell disease;
9        (3) individuals diagnosed with sickle cell disease;
10        (4) representatives of community-based organizations
11    that serve individuals with sickle cell disease; and
12        (5) data collected via newborn screening for sickle
13    cell disease;
14shall perform a study to determine the prevalence, impact, and
15needs of individuals with sickle cell disease and the sickle
16cell trait in Illinois.
17    (b) The study must include the following:
18        (1) The prevalence, by geographic location, of
19    individuals diagnosed with sickle cell disease in
20    Illinois.
21        (2) The prevalence, by geographic location, of
22    individuals diagnosed as sickle cell trait carriers in
23    Illinois.
24        (3) The availability and affordability of screening
25    services in Illinois for the sickle cell trait.



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1        (4) The location and capacity of the following for the
2    treatment of sickle cell disease and sickle cell trait
3    carriers:
4            (A) Treatment centers.
5            (B) Clinics.
6            (C) Community-based social service organizations.
7            (D) Medical specialists.
8        (5) The unmet medical, psychological, and social needs
9    encountered by individuals in Illinois with sickle cell
10    disease.
11        (6) The underserved areas of Illinois for the treatment
12    of sickle cell disease.
13        (7) Recommendations for actions to address any
14    shortcomings in the State identified under this Section.
15    (c) The Department shall submit a report on the study
16performed under this Section to the General Assembly.
17    Section 30. Implementation subject to appropriation.
18Implementation of this Act is subject to appropriation.
19    Section 90. The State Finance Act is amended by adding
20Section 5.930 as follows:
21    (30 ILCS 105/5.930 new)
22    Sec. 5.930. The Sickle Cell Chronic Disease Fund.".