Full Text of HB0823 101st General Assembly
HB0823sam003 101ST GENERAL ASSEMBLY | 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 | 3 | | replacing everything after the enacting clause with the | 4 | | following:
| 5 | | "Section 1. Short title. This Act may be cited as the | 6 | | Sickle 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 | 10 | | Treatment Program. | 11 | | Section 10. Sickle Cell Prevention, Care, and Treatment | 12 | | Program. The Department shall establish a grant program for the | 13 | | purpose of providing for the prevention, care, and treatment of | 14 | | sickle cell disease and for educational programs concerning the | 15 | | disease. |
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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 | 17 | | the sickle cell disease educational outreach program
described | 18 | | in 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 | 21 | | special fund in the State treasury for the purpose of carrying | 22 | | out the provisions of this
Act and for no other
purpose. The | 23 | | Fund 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 | 6 | | thereafter, 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;
| 15 | | shall perform a study to determine the prevalence, impact, and
| 16 | | needs of individuals with sickle cell disease and the sickle | 17 | | cell 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 | 17 | | performed
under this Section to the General Assembly. | 18 | | Section 30. Implementation subject to appropriation. | 19 | | Implementation of this Act is subject to appropriation. | 20 | | Section 90. The State Finance Act is amended by adding | 21 | | Section 5.930 as follows: | 22 | | (30 ILCS 105/5.930 new) | 23 | | Sec. 5.930. The Sickle Cell Chronic Disease Fund. ".
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