HB4742 101ST GENERAL ASSEMBLY

LRB101 17826 KTG 69811 b

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.

FISCAL NOTE ACT MAY APPLY

A BILL FOR

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.

(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.

(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 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 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 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 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 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.