Sen. Mattie Hunter
Filed: 5/23/2020
 
 

 

 

 
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1
AMENDMENT TO HOUSE BILL 823




2    AMENDMENT NO. ______. Amend House Bill 823, AS AMENDED, by 
3replacing everything after the enacting clause with the 
4following:

 
 
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 
15disease.
 
 
 
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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.".