Sen. Mattie Hunter
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AMENDMENT TO HOUSE BILL 823
AMENDMENT NO. ______. Amend House Bill 823, AS AMENDED, by
replacing everything after the enacting clause with the
This Act may be cited as the
Sickle Cell Prevention, Care, and Treatment Program Act.
As used in this Act:
"Department" means the Department of Public Health.
"Program" means the Sickle Cell Prevention, Care, and
Sickle Cell Prevention, Care, and Treatment
The Department shall establish a grant program for the
purpose of providing for the prevention, care, and treatment of
sickle cell disease and for educational programs concerning the
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Grants; eligibility standards.
(a) The Department shall do the following:
(1)(A) Develop application criteria and standards of
eligibility for groups
or organizations who apply for funds
under the program.
(B) Make available grants to groups and organizations
the eligibility standards set by the Department.
(i) the highest priority for grants shall be
established sickle cell disease
community-based organizations throughout Illinois; and
(ii) priority shall also be given to ensuring the
establishment of sickle cell disease centers in
areas that have a higher population of
sickle cell disease
(2) Determine the maximum amount available for each
grant provided under subparagraph (B) of paragraph (1).
(3) Determine policies for the expiration and renewal
of grants provided under subparagraph (B) of paragraph (1).
(4) Require that all grant funds be used for the
prevention, care, and treatment of sickle cell
for educational programs concerning the
Grant funds shall be used for one or more of the
(A) Assisting in the development and expansion of
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care for the
treatment of individuals with sickle cell
for adults, including the
following types of care:
(i) Self-administered care.
(ii) Preventive care.
(iii) Home care.
(iv) Other evidence-based medical procedures
techniques designed to provide maximum control
sickling episodes typical of occurring to an
(B) Increasing access to health care for
individuals with sickle cell disease.
(C) Establishing additional sickle cell disease
(D) Increasing access to mental health resources
and pain management therapies for individuals with
sickle cell disease.
(E) Providing counseling to any individual, at no
cost, concerning sickle cell disease and sickle cell
trait, and the characteristics, symptoms, and
treatment of the disease.
(i) The counseling described in this
subparagraph (E) may consist of any of the
(I) Genetic counseling for an individual
who tests positive for the sickle cell trait.
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(II) Psychosocial counseling for an
individual who tests positive for sickle cell
disease, including any of the following:
(aa) Social service counseling.
(bb) Psychological counseling.
(cc) Psychiatric counseling.
(5) Develop a sickle cell disease educational
program that includes the dissemination of
materials to the following concerning sickle cell
and sickle cell trait:
(A) Medical residents.
(C) Schools and universities.
(6) Adopt any rules necessary to implement the
provisions of this Act.
(b) The Department may contract with an entity to
the sickle cell disease educational outreach program
in paragraph (5) of subsection (a).
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
Fund shall be administered by the Department.
(b) The Fund shall consist of:
(1) Any moneys appropriated to the Department for the
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Sickle Cell Prevention, Care, and Treatment Program.
(2) Gifts, bequests, and other sources of funding.
(3) All interest earned on moneys in the Fund.
(a) Before July 1, 2021, and on a
thereafter, the Department, with the assistance
(1) the Center for Minority Health Services;
(2) health care providers that treat individuals with
(3) individuals diagnosed with sickle cell disease;
(4) representatives of community-based organizations
serve individuals with sickle cell disease; and
(5) data collected via newborn screening for sickle
shall perform a study to determine the prevalence, impact, and
needs of individuals with sickle cell disease and the sickle
cell trait in
(b) The study must include the following:
(1) The prevalence, by geographic location, of
diagnosed with sickle cell disease in
(2) The prevalence, by geographic location, of
diagnosed as sickle cell trait carriers in
(3) The availability and affordability of screening
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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
(A) Treatment centers.
(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
(6) The underserved areas of Illinois for the treatment
sickle cell disease.
(7) Recommendations for actions to address any
in the State identified under this Section.
(c) The Department shall submit a report on the study
under this Section to the General Assembly.
Implementation subject to appropriation.
Implementation of this Act is subject to appropriation.
The State Finance Act is amended by adding
Section 5.930 as follows:
(30 ILCS 105/5.930 new)
The Sickle Cell Chronic Disease Fund.