Illinois General Assembly - Full Text of HB1882
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Full Text of HB1882  95th General Assembly



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1     AN ACT concerning public health.
2     Be it enacted by the People of the State of Illinois,
3 represented in the General Assembly:
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:
6     (410 ILCS 420/1)  (from Ch. 111 1/2, par. 2901)
7     Sec. 1. Definitions. As used in this Act, unless the
8 context clearly requires otherwise:
9     (1) "Department" means the Illinois Department of
10 Healthcare and Family Services Public Aid.
11     (1.5) "Director" means the Director of Healthcare and
12 Family Services and the Director of Insurance Public Aid.
13     (2) (Blank).
14     (3) "Hemophilia" means a bleeding tendency resulting from a
15 genetically determined deficiency in the blood.
16     (4) (Blank). "Committee" means the Hemophilia Advisory
17 Committee created under this Act.
18     (5) "Eligible person" means any resident of the State
19 suffering from hemophilia.
20     (6) "Family" means:
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
2     dependent the eligible person is, and
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.
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
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.
15     (8) "Gross income" means the base income for State income
16 tax purposes of all members of the family.
17     (9) "Available family income" means the lesser of:
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
20         (b) One half of gross income.
21     (10) "Board" means the Hemophilia Advisory Review Board.
22 (Source: P.A. 89-507, eff. 7-1-97; 90-587, eff. 7-1-98; revised
23 12-15-05.)
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 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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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 the National
13     Hemophilia Foundation (NHF), an internationally recognized
14     body whose guidelines set the standards of care for
15     hemophilia and 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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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 disorders.
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 with hemophilia, a
6 bleeding disorder other than hemophilia, or persons
7 experienced in the diagnosis, treatment, care, and support of
8 individuals 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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1 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.
6     (410 ILCS 420/4 rep.)
7     Section 10. The Hemophilia Care Act is amended by repealing
8 Section 4.