Bill Text: IL HB4742 | 2019-2020 | 101st General Assembly | Introduced

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Bill Title: 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.

Spectrum: Partisan Bill (Democrat 7-0)

Status: (Introduced - Dead) 2020-06-23 - Rule 19(b) / Re-referred to Rules Committee [HB4742 Detail]

Download: Illinois-2019-HB4742-Introduced.html

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101ST GENERAL ASSEMBLY State of Illinois 2019 and 2020 HB4742 Introduced , by Rep. Mary E. Flowers 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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AN ACT concerning public aid.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 1. Short title. This Act may be cited as the Sickle
Cell Prevention, Care, and Treatment Program Act.
Section 5. Definitions. As used in this Act:
"Department" means the Department of Healthcare and Family
Services.
"Program" means the Sickle Cell Prevention, Care, and
Treatment Program.
Section 10. Sickle Cell Prevention, Care, and Treatment
Program. The Department shall 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.
Section 15. Grants; eligibility standards.
(a) The Department shall do the following:
(1) Develop the following:
(A) Application criteria and standards of
eligibility for groups or organizations who apply for
funds under the program.

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

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

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

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in paragraph (5) of subsection (b).
Section 20. Sickle Cell Chronic Disease Fund.
(a) The Sickle Cell Chronic Disease Fund is created as a
special fund in the State treasury for the purpose of carrying
out the provisions of this Act and for no other purpose. The
Fund shall be administered by the Department.
(b) The Fund shall consist of:
(1) Any moneys appropriated to the Department for the
Sickle Cell Prevention, Care, and Treatment Program.
(2) Gifts, bequests, and other sources of funding.
(3) All interest earned on moneys in the Fund.
(c) The restrictions on special funds provided in
subsections (b) and (c) of Section 5 of the State Finance Act
do not apply to the Fund.
Section 25. Study.
(a) Before July 1, 2021, 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
sickle cell disease;
(3) individuals diagnosed with sickle cell disease;
(4) representatives of community-based organizations
that serve individuals with sickle cell disease; and
(5) data collected via newborn screening for sickle

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cell disease;
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
individuals diagnosed with sickle cell disease in
Illinois.
(2) The prevalence, by geographic location, of
individuals diagnosed as sickle cell trait carriers in
Illinois.
(3) The availability and affordability of screening
services in Illinois for the sickle cell trait.
(4) The location and capacity of the following for the
treatment of sickle cell disease and sickle cell trait
carriers:
(A) Treatment centers.
(B) Clinics.
(C) Community-based social service organizations.
(D) Medical specialists.
(5) The unmet medical, psychological, and social needs
encountered by individuals in Illinois with sickle cell
disease.
(6) The underserved areas of Illinois for the treatment
of sickle cell disease.
(7) Recommendations for actions to address any

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

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