101ST GENERAL ASSEMBLY
State of Illinois
2019 and 2020
HB4742

 

Introduced 2/18/2020, by Rep. Mary E. Flowers - LaToya Greenwood, William Davis and La Shawn K. Ford

 

SYNOPSIS AS INTRODUCED:
 
New Act
30 ILCS 105/5  from Ch. 127, par. 141
30 ILCS 105/5.930 new

    Creates the Sickle Cell Prevention, Care, and Treatment Program Act. Requires the Department of Healthcare and Family Services to establish a program for the purpose of providing for the prevention, care, and treatment of sickle cell disease and for educational programs concerning the disease. Requires the Department to: (1) develop application criteria and standards of eligibility for groups or organizations that apply for funds under the program; (2) develop standards for determining eligibility for individuals requesting care and treatment for sickle cell disease under the program; and (3) make available grants to groups and organizations who meet the eligibility standards set by the Department. Provides that the highest priority for grants shall be accorded to established sickle cell disease community-based organizations, and priority shall be given to ensuring the establishment of sickle cell disease centers in underserved areas that have a higher population of sickle cell disease patients. Provides that the program must: (i) increase access to health care, mental health resources, and pain management therapies for individuals with sickle cell disease; (ii) provide counseling to any individual, at no cost, concerning sickle cell disease and the sickle cell trait; (iii) provide for the establishment of additional sickle cell disease infusion centers; and (iv) provide for the development of a sickle cell disease educational outreach program. Requires the Department to conduct a study to determine the prevalence, impact, and needs of individuals with sickle cell disease and the sickle cell trait in Illinois. Amends the State Finance Act. Creates the Sickle Cell Chronic Disease Fund.


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FISCAL NOTE ACT MAY APPLY

 

 

A BILL FOR

 

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1    AN ACT concerning public aid.
 
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
 
4    Section 1. Short title. This Act may be cited as the Sickle
5Cell Prevention, Care, and Treatment Program Act.
 
6    Section 5. Definitions. As used in this Act:
7    "Department" means the Department of Healthcare and Family
8Services.
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 program for the
13purpose of providing for the prevention, care, and treatment of
14sickle cell disease and for educational programs concerning the
15disease.
 
16    Section 15. Grants; eligibility standards.
17    (a) The Department shall do the following:
18        (1) Develop the following:
19            (A) Application criteria and standards of
20        eligibility for groups or organizations who apply for
21        funds under the program.

 

 

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1            (B) Standards for determining eligibility for
2        individuals requesting care and treatment for sickle
3        cell disease under the program.
4        (2) Make available grants to groups and organizations
5    who meet the eligibility standards set by the Department.
6    However:
7            (A) the highest priority for grants shall be
8        accorded to established sickle cell disease
9        community-based organizations throughout Illinois; and
10            (B) priority shall also be given to ensuring the
11        establishment of sickle cell disease centers in
12        underserved areas that have a higher population of
13        sickle cell disease patients.
14        (3) Determine the maximum amount available for each
15    grant.
16        (4) Determine policies for expiration and renewal of
17    grants.
18        (5) Require that all grant funds be used for the
19    purpose of prevention, care, and treatment of sickle cell
20    disease or for educational programs concerning the
21    disease.
22        (6) Assist in the development and expansion of care for
23    the treatment of individuals with sickle cell disease,
24    particularly for adults, including the following types of
25    care:
26            (A) Self-administered.

 

 

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1            (B) Preventive.
2            (C) Home care.
3            (D) Other evidence-based medical procedures and
4        techniques designed to provide maximum control over
5        sickling episodes typical of occurring to an
6        individual with the disease.
7        (7) Adopt any rules necessary to implement the
8    provisions of this Act.
9    (b) The program must provide for the following:
10        (1) Increased access to health care for individuals
11    with sickle cell disease, with services provided either:
12            (A) directly through the Department; or
13            (B) indirectly through a contract with health care
14        providers, municipal health departments, or
15        community-based organizations.
16        (2) Establishment of additional sickle cell disease
17    infusion centers.
18        (3) Increased access to mental health resources and
19    pain management therapies for individuals with sickle cell
20    disease, with services provided either:
21            (A) directly through the Department; or
22            (B) indirectly through a contract with health care
23        providers, municipal health departments, or
24        community-based organizations.
25        (4) Counseling to any individual, at no cost,
26    concerning sickle cell disease and sickle cell trait, and

 

 

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1    the characteristics, symptoms, and treatment of the
2    disease, with services provided either:
3            (A) directly through the Department; or
4            (B) indirectly through a contract with health care
5        providers, municipal health departments, or
6        community-based organizations.
7        (5) The development of a sickle cell disease
8    educational outreach program that includes the
9    dissemination of educational materials to the following
10    concerning sickle cell disease and sickle cell trait:
11            (A) Medical residents.
12            (B) Immigrants.
13            (C) Schools and universities.
14            (D) Businesses.
15    (c) The counseling described in paragraph (4) of subsection
16(b) may consist of any of the following:
17        (1) Genetic counseling for an individual who tests
18    positive for the sickle cell trait.
19        (2) Psychosocial counseling for an individual who
20    tests positive for sickle cell disease, including any of
21    the following:
22            (A) Social service counseling.
23            (B) Psychological counseling.
24            (C) Psychiatric counseling.
25    (d) The Department may contract with an entity to implement
26the sickle cell disease educational outreach program described

 

 

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1in paragraph (5) of subsection (b).
 
2    Section 20. Sickle Cell Chronic Disease Fund.
3    (a) The Sickle Cell Chronic Disease Fund is created as a
4special fund in the State treasury for the purpose of carrying
5out the provisions of this Act and for no other purpose. The
6Fund shall be administered by the Department.
7    (b) The Fund shall consist of:
8        (1) Any moneys appropriated to the Department for the
9    Sickle Cell Prevention, Care, and Treatment Program.
10        (2) Gifts, bequests, and other sources of funding.
11        (3) All interest earned on moneys in the Fund.
12    (c) The restrictions on special funds provided in
13subsections (b) and (c) of Section 5 of the State Finance Act
14do not apply to the Fund.
 
15    Section 25. Study.
16    (a) Before July 1, 2021, and on a biennial basis
17thereafter, the Department, with the assistance of:
18        (1) the Center for Minority Health Services;
19        (2) health care providers that treat individuals with
20    sickle cell disease;
21        (3) individuals diagnosed with sickle cell disease;
22        (4) representatives of community-based organizations
23    that serve individuals with sickle cell disease; and
24        (5) data collected via newborn screening for sickle

 

 

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1    cell disease;
2shall perform a study to determine the prevalence, impact, and
3needs of individuals with sickle cell disease and the sickle
4cell trait in Illinois.
5    (b) The study must include the following:
6        (1) The prevalence, by geographic location, of
7    individuals diagnosed with sickle cell disease in
8    Illinois.
9        (2) The prevalence, by geographic location, of
10    individuals diagnosed as sickle cell trait carriers in
11    Illinois.
12        (3) The availability and affordability of screening
13    services in Illinois for the sickle cell trait.
14        (4) The location and capacity of the following for the
15    treatment of sickle cell disease and sickle cell trait
16    carriers:
17            (A) Treatment centers.
18            (B) Clinics.
19            (C) Community-based social service organizations.
20            (D) Medical specialists.
21        (5) The unmet medical, psychological, and social needs
22    encountered by individuals in Illinois with sickle cell
23    disease.
24        (6) The underserved areas of Illinois for the treatment
25    of sickle cell disease.
26        (7) Recommendations for actions to address any

 

 

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1    shortcomings in the State identified under this Section.
2    (c) The Department shall submit a report on the study
3performed under this Section to the General Assembly.
 
4    Section 30. The State Finance Act is amended by changing
5Section 5 and by adding Section 5.930 as follows:
 
6    (30 ILCS 105/5)  (from Ch. 127, par. 141)
7    Sec. 5. Special funds.
8    (a) There are special funds in the State Treasury
9designated as specified in the Sections which succeed this
10Section 5 and precede Section 6.
11    (b) Except as provided in the Illinois Motor Vehicle Theft
12Prevention and Insurance Verification Act, when any special
13fund in the State Treasury is discontinued by an Act of the
14General Assembly, any balance remaining therein on the
15effective date of such Act shall be transferred to the General
16Revenue Fund, or to such other fund as such Act shall provide.
17Warrants outstanding against such discontinued fund at the time
18of the transfer of any such balance therein shall be paid out
19of the fund to which the transfer was made.
20    (c) When any special fund in the State Treasury has been
21inactive for 18 months or longer, the fund is automatically
22terminated by operation of law and the balance remaining in
23such fund shall be transferred by the Comptroller to the
24General Revenue Fund. When a special fund has been terminated

 

 

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1by operation of law as provided in this Section, the General
2Assembly shall repeal or amend all Sections of the statutes
3creating or otherwise referring to that fund.
4    The Comptroller shall be allowed the discretion to maintain
5or dissolve any federal trust fund which has been inactive for
618 months or longer.
7    (d) (Blank).
8    (e) (Blank).
9    (f) The restrictions on special funds provided in
10subsections (b) and (c) do not apply to the Sickle Cell Chronic
11Disease Fund.
12(Source: P.A. 100-373, eff. 1-1-18.)
 
13    (30 ILCS 105/5.930 new)
14    Sec. 5.930. The Sickle Cell Chronic Disease Fund.