Full Text of SB1580 95th General Assembly
SB1580eng 95TH GENERAL ASSEMBLY
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| AN ACT concerning public health.
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| Be it enacted by the People of the State of Illinois,
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| represented in the General Assembly:
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| Section 5. The Hemophilia Care Act is amended by changing | 5 |
| Section 1 and by adding Sections 1.5 and 2.5 as follows:
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| (410 ILCS 420/1) (from Ch. 111 1/2, par. 2901)
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| Sec. 1. Definitions. As used in this Act, unless the | 8 |
| context clearly
requires otherwise:
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| (1) "Department" means the Illinois Department of | 10 |
| Healthcare and Family Services
Public Aid .
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| (1.5) "Director" means the Director of Healthcare and | 12 |
| Family Services and the Director of Insurance
Public Aid .
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| (2) (Blank).
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| (3) "Hemophilia" means a bleeding tendency resulting from a | 15 |
| genetically
determined deficiency in the blood.
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| (4) (Blank).
"Committee" means the Hemophilia Advisory | 17 |
| Committee created under this
Act.
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| (5) "Eligible person" means any resident of the State | 19 |
| suffering from
hemophilia.
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| (6) "Family" means:
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| (a) In the case of a patient who is a dependent of | 22 |
| another person or
couple
as defined by the Illinois Income | 23 |
| Tax Act, all those persons for whom exemption
is claimed in |
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| the State income tax return of the person or couple whose
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| dependent the eligible person is, and
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| (b) In all other cases, all those persons for whom | 4 |
| exemption is
claimed
in the State income tax return of the | 5 |
| eligible person, or of the eligible
person and his spouse.
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| (7) "Eligible cost of hemophilia services" means the cost | 7 |
| of blood
transfusions,
blood derivatives, and for outpatient | 8 |
| services, of physician charges, medical
supplies, and | 9 |
| appliances, used in the treatment of eligible persons for
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| hemophilia, plus one half of the cost of hospital inpatient | 11 |
| care, minus
any amount of such cost which is eligible for | 12 |
| payment or reimbursement by
any hospital or medical insurance | 13 |
| program, by any other government medical
or financial | 14 |
| assistance program, or by any charitable assistance
program.
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| (8) "Gross income" means the base income for State income | 16 |
| tax purposes
of all members of the family.
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| (9) "Available family income" means the lesser of:
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| (a) Gross income minus the sum of (1) $5,500,
and (2) | 19 |
| $3,500 times the number of persons
in the family, or
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| (b) One half of gross income.
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| (10) "Board" means the Hemophilia Advisory Review Board.
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| (Source: P.A. 89-507, eff. 7-1-97; 90-587, eff. 7-1-98; revised | 23 |
| 12-15-05.)
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| (410 ILCS 420/1.5 new) | 25 |
| Sec. 1.5. Findings. The General Assembly finds all of the |
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| following: | 2 |
| (1) Inherited hemophilia and other bleeding disorders | 3 |
| are devastating health conditions that can cause serious | 4 |
| financial, social, and emotional hardships for patients | 5 |
| and their families. Hemophilia, which occurs predominantly | 6 |
| in males, is a rare but well-known type of inherited | 7 |
| bleeding disorder in which one of several proteins normally | 8 |
| found in blood are either deficient or inactive, and | 9 |
| causing pain, swelling, and permanent damage to joints and | 10 |
| muscles. The disorder affects Americans of all racial and | 11 |
| ethnic backgrounds. In about one-third of all cases, there | 12 |
| is no known family history of the disorder. In these cases, | 13 |
| the disease developed after a new or spontaneous gene | 14 |
| mutation. | 15 |
| (2) Hemophilia is one of a spectrum of devastating | 16 |
| chronic bleeding disorders impacting Americans. Von | 17 |
| Willebrand Disease, another type of bleeding disorder, is | 18 |
| caused by a deficiency on the von Willebrand protein. | 19 |
| Persons with the disorder often bruise easily, have | 20 |
| frequent nosebleeds, or bleed after tooth extraction, | 21 |
| tonsillectomy, or other surgery. In some instances, women | 22 |
| will have prolonged menstrual bleeding. The disorder | 23 |
| occurs in about 1% to 2% of the U.S. population. | 24 |
| (3) Appropriate care and treatment are necessities for | 25 |
| maintaining optimum health for persons afflicted with | 26 |
| hemophilia and other bleeding disorders. |
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| (4) While hemophilia and other bleeding disorders are | 2 |
| incurable, advancements in drug therapies are allowing | 3 |
| individuals greater latitude in managing their conditions, | 4 |
| fostering independence, and minimizing chronic | 5 |
| complications such as damage to the joints and muscles, | 6 |
| blood-transmitted infectious diseases, and chronic liver | 7 |
| diseases. At the same time, treatment for clotting | 8 |
| disorders is saving more and more lives. The rarity of | 9 |
| these disorders coupled with the delicate processes for | 10 |
| producing factors, however, makes treating these disorders | 11 |
| extremely costly. As a result, insurance coverage is a | 12 |
| major concern for patients and their families. | 13 |
| (5) It is thus the intent of the General Assembly | 14 |
| through implementation of this Act to establish an advisory | 15 |
| board to provide expert advice to the State on health and | 16 |
| insurance policies, plans, and public health programs that | 17 |
| impact individuals with hemophilia and other bleeding | 18 |
| disorders. | 19 |
| (410 ILCS 420/2.5 new) | 20 |
| Sec. 2.5. Hemophilia Advisory Review Board. | 21 |
| (a) The Director of Public Health in collaboration and in | 22 |
| consultation with the Director of Insurance, shall establish an | 23 |
| independent advisory board known as the Hemophilia Advisory | 24 |
| Review Board. The Board shall review, may comment upon, and | 25 |
| make recommendations to the Directors with regard to, but not |
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| limited to the following: | 2 |
| (1) Proposed legislative or administrative changes to | 3 |
| policies and programs that are integral to the health and | 4 |
| wellness of individuals with hemophilia and other bleeding | 5 |
| disorders. | 6 |
| (2) Standards of care and treatment for persons living | 7 |
| with hemophilia and other bleeding disorders. In examining | 8 |
| standards of care, the Board shall protect open access to | 9 |
| any and all treatments for hemophilia and other bleeding | 10 |
| disorders, in accordance with federal guidelines and | 11 |
| standards of care guidelines developed by the Medical and | 12 |
| Scientific Advisory Council (MASAC) of National Hemophilia | 13 |
| Foundation (NHF), an internationally recognized body whose | 14 |
| guidelines set the standards of care for hemophilia and | 15 |
| other bleeding disorders around the world. | 16 |
| (3) The development of community-based initiatives to | 17 |
| increase awareness of care and treatment for persons living | 18 |
| with hemophilia and other bleeding disorders. The | 19 |
| Department of Health may provide such services through | 20 |
| cooperative agreements with Hemophilia Treatment Centers, | 21 |
| medical facilities, schools, nonprofit organizations | 22 |
| servicing the bleeding disorder community, or other | 23 |
| appropriate means. | 24 |
| (4) Facilitating linkages for persons with hemophilia | 25 |
| and other bleeding disorders. | 26 |
| (5) Protecting the rights of people living with |
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| hemophilia and other bleeding disorders to appropriate | 2 |
| health insurance coverage be it under a private or | 3 |
| State-sponsored health insurance provider. | 4 |
| (b) The Board shall consist of the Director of Healthcare | 5 |
| and Family Services and the Director of Insurance or their | 6 |
| designee, who shall serve as non-voting members, and 7 voting | 7 |
| members appointed by the Governor in consultation and in | 8 |
| collaboration with the Directors. The voting members shall be | 9 |
| selected from among the following member groups: | 10 |
| (1) one board-certified physician licensed, practicing | 11 |
| and currently treating individuals with hemophilia or | 12 |
| other bleeding disorders; | 13 |
| (2) one nurse licensed, practicing and currently | 14 |
| treating individuals with hemophilia or other bleeding | 15 |
| disorders; | 16 |
| (3) one social worker licensed, practicing and | 17 |
| currently treating individuals with hemophilia or other | 18 |
| bleeding disorders; | 19 |
| (4) one representative of a federally funded | 20 |
| Hemophilia Treatment Center; | 21 |
| (5) one representative of an organization established | 22 |
| under the Illinois Insurance Code for the purpose of | 23 |
| providing health insurance; | 24 |
| (6) one representative of a voluntary health | 25 |
| organization that currently services the hemophilia and | 26 |
| other bleeding disorders community; and |
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| (7) one patient or caregiver of a patient with | 2 |
| hemophilia or other bleeding disorder.
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| The Board may also have up to 5 additional nonvoting members as | 4 |
| determined appropriate by the Directors. Nonvoting members may | 5 |
| be persons with or caregivers of a patient with hemophilia or a | 6 |
| bleeding disorder other than hemophilia or persons experienced | 7 |
| in the diagnosis, treatment, care, and support of individuals | 8 |
| with hemophilia or other bleeding disorders. | 9 |
| No more than a majority of the voting members may be of the | 10 |
| same political party.
Members of the Board shall elect one of | 11 |
| its members to act as chair for a term of 3 years. The chair | 12 |
| shall retain all voting rights. If there is a vacancy on the | 13 |
| Board, such position may be filled in the same manner as the | 14 |
| original appointment.
Members of the Board shall receive no | 15 |
| compensation, but may be reimbursed for actual expenses | 16 |
| incurred in the carrying out of their duties. The Board shall | 17 |
| meet no less than 4 times per year and follow all policies and | 18 |
| procedures of the State of Illinois Open Meetings Law. | 19 |
| (c) No later than 6 months after the date of enactment of | 20 |
| this amendatory Act, the Board shall submit to the Governor and | 21 |
| the General Assembly a report with recommendations for | 22 |
| maintaining access to care and obtaining appropriate health | 23 |
| insurance coverage for individuals with hemophilia and other | 24 |
| bleeding disorders. The report shall be subject to public | 25 |
| review and comment prior to adoption. No later than 6 months | 26 |
| after adoption by the Governor and Legislature and annually |
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| thereafter, the Director of Healthcare and Family Services | 2 |
| shall issue a report, which shall be made available to the | 3 |
| public, on the status of implementing the recommendations as | 4 |
| proposed by the Board and on any state and national activities | 5 |
| with regard to hemophilia and other bleeding disorders.
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| (410 ILCS 420/4 rep.)
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| Section 10. The Hemophilia Care Act is amended by repealing | 8 |
| Section 4.
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