Sen. Mattie Hunter

Filed: 5/23/2020





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2    AMENDMENT NO. ______. Amend House Bill 823, AS AMENDED, by
3replacing everything after the enacting clause with the
5    "Section 1. Short title. This Act may be cited as the
6Sickle Cell Prevention, Care, and Treatment Program Act.
7    Section 5. Definitions. As used in this Act:
8    "Department" means the Department of Public Health.
9    "Program" means the Sickle Cell Prevention, Care, and
10Treatment Program.
11    Section 10. Sickle Cell Prevention, Care, and Treatment
12Program. The Department shall establish a grant program for the
13purpose of providing for the prevention, care, and treatment of
14sickle 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



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



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



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



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