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1 | AN ACT concerning public health.
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2 | Be it enacted by the People of the State of Illinois,
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3 | represented in the General Assembly:
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4 | 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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6 | (410 ILCS 420/1) (from Ch. 111 1/2, par. 2901)
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7 | Sec. 1. Definitions. As used in this Act, unless the | ||||||||||||||||||||||||||||||
8 | context clearly
requires otherwise:
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9 | (1) "Department" means the Illinois Department of | ||||||||||||||||||||||||||||||
10 | Healthcare and Family Services
Public Aid .
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11 | (1.5) "Director" means the Director of Healthcare and | ||||||||||||||||||||||||||||||
12 | Family Services and the Director of Insurance
Public Aid .
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13 | (2) (Blank).
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14 | (3) "Hemophilia" means a bleeding tendency resulting from a | ||||||||||||||||||||||||||||||
15 | genetically
determined deficiency in the blood.
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16 | (4) (Blank).
"Committee" means the Hemophilia Advisory | ||||||||||||||||||||||||||||||
17 | Committee created under this
Act.
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18 | (5) "Eligible person" means any resident of the State | ||||||||||||||||||||||||||||||
19 | suffering from
hemophilia.
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20 | (6) "Family" means:
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21 | (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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1 | the State income tax return of the person or couple whose
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2 | dependent the eligible person is, and
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3 | (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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6 | (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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10 | 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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15 | (8) "Gross income" means the base income for State income | ||||||
16 | tax purposes
of all members of the family.
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17 | (9) "Available family income" means the lesser of:
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18 | (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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20 | (b) One half of gross income.
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21 | (10) "Board" means the Hemophilia Advisory Review Board.
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22 | (Source: P.A. 89-507, eff. 7-1-97; 90-587, eff. 7-1-98; revised | ||||||
23 | 12-15-05.)
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24 | (410 ILCS 420/1.5 new) | ||||||
25 | Sec. 1.5. Findings. The General Assembly finds all of the |
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1 | 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 US 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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1 | (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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1 | 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 organization | ||||||
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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1 | 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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1 | (7) one patient or caregiver of a patient with | ||||||
2 | hemophilia or other bleeding disorder.
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3 | 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 hemophilia, a | ||||||
6 | bleeding disorder other than hemophilia, or disorder, or | ||||||
7 | persons experienced in the diagnosis, treatment, care, and | ||||||
8 | support of individuals with hemophilia or other bleeding and | ||||||
9 | disorders. | ||||||
10 | No more than a majority of the voting members may be of | ||||||
11 | the same political party.
Members of the Board shall elect one | ||||||
12 | of its members to act as chair for a term of 3 years. The chair | ||||||
13 | shall retain all voting rights. If there is a vacancy on the | ||||||
14 | Board, such position may be filled in the same manner as the | ||||||
15 | original appointment.
Members of the Board shall receive no | ||||||
16 | compensation, but may be reimbursed for actual expenses | ||||||
17 | incurred in the carrying out of their duties. The Board shall | ||||||
18 | meet no less than 4 times per year and follow all policies and | ||||||
19 | procedures of the State of Illinois Open Meetings Law. | ||||||
20 | (c) No later than 6 months after the date of enactment of | ||||||
21 | this amendatory Act, the Board shall submit to the Governor and | ||||||
22 | the General Assembly a report with recommendations for | ||||||
23 | maintaining access to care and obtaining appropriate health | ||||||
24 | insurance coverage for individuals with hemophilia and other | ||||||
25 | bleeding and disorders. The report shall be subject to public | ||||||
26 | review and comment prior to adoption. No later than 6 months |
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1 | after adoption by the Governor and Legislature and annually | ||||||
2 | thereafter, the Director of Healthcare and Family Services | ||||||
3 | shall issue a report, which shall be made available to the | ||||||
4 | public, on the status of implementing the recommendations as | ||||||
5 | proposed by the Board and on any state and national activities | ||||||
6 | with regard to hemophilia and other bleeding and disorders.
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7 | (410 ILCS 420/4 rep.)
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8 | Section 10. The Hemophilia Care Act is amended by repealing | ||||||
9 | Section 4.
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