SB1580eng 95TH GENERAL ASSEMBLY

SB1580 Engrossed LRB095 09918 KBJ 30129 b

AN ACT concerning public health.

Be it enacted by the People of the State of Illinois, represented in the General Assembly:

Section 5. The Hemophilia Care Act is amended by changing Section 1 and by adding Sections 1.5 and 2.5 as follows:

(410 ILCS 420/1) (from Ch. 111 1/2, par. 2901)

Sec. 1. Definitions. As used in this Act, unless the context clearly requires otherwise:

(1) "Department" means the Illinois Department of Healthcare and Family Services Public Aid.

(1.5) "Director" means the Director of Healthcare and Family Services and the Director of Insurance Public Aid.

(2) (Blank).

(3) "Hemophilia" means a bleeding tendency resulting from a genetically determined deficiency in the blood.

(4) (Blank). "Committee" means the Hemophilia Advisory Committee created under this Act.

(5) "Eligible person" means any resident of the State suffering from hemophilia.

(6) "Family" means:

(a) In the case of a patient who is a dependent of another person or couple as defined by the Illinois Income Tax Act, all those persons for whom exemption is claimed in the State income tax return of the person or couple whose dependent the eligible person is, and

(b) In all other cases, all those persons for whom exemption is claimed in the State income tax return of the eligible person, or of the eligible person and his spouse.

(7) "Eligible cost of hemophilia services" means the cost of blood transfusions, blood derivatives, and for outpatient services, of physician charges, medical supplies, and appliances, used in the treatment of eligible persons for hemophilia, plus one half of the cost of hospital inpatient care, minus any amount of such cost which is eligible for payment or reimbursement by any hospital or medical insurance program, by any other government medical or financial assistance program, or by any charitable assistance program.

(8) "Gross income" means the base income for State income tax purposes of all members of the family.

(9) "Available family income" means the lesser of:

(a) Gross income minus the sum of (1) $5,500, and (2) $3,500 times the number of persons in the family, or

(b) One half of gross income.

(10) "Board" means the Hemophilia Advisory Review Board.

(Source: P.A. 89-507, eff. 7-1-97; 90-587, eff. 7-1-98; revised 12-15-05.)

(410 ILCS 420/1.5 new)

Sec. 1.5. Findings. The General Assembly finds all of the following:

(1) Inherited hemophilia and other bleeding disorders are devastating health conditions that can cause serious financial, social, and emotional hardships for patients and their families. Hemophilia, which occurs predominantly in males, is a rare but well-known type of inherited bleeding disorder in which one of several proteins normally found in blood are either deficient or inactive, and causing pain, swelling, and permanent damage to joints and muscles. The disorder affects Americans of all racial and ethnic backgrounds. In about one-third of all cases, there is no known family history of the disorder. In these cases, the disease developed after a new or spontaneous gene mutation.

(2) Hemophilia is one of a spectrum of devastating chronic bleeding disorders impacting Americans. Von Willebrand Disease, another type of bleeding disorder, is caused by a deficiency on the von Willebrand protein. Persons with the disorder often bruise easily, have frequent nosebleeds, or bleed after tooth extraction, tonsillectomy, or other surgery. In some instances, women will have prolonged menstrual bleeding. The disorder occurs in about 1% to 2% of the U.S. population.

(3) Appropriate care and treatment are necessities for maintaining optimum health for persons afflicted with hemophilia and other bleeding disorders.

(4) While hemophilia and other bleeding disorders are incurable, advancements in drug therapies are allowing individuals greater latitude in managing their conditions, fostering independence, and minimizing chronic complications such as damage to the joints and muscles, blood-transmitted infectious diseases, and chronic liver diseases. At the same time, treatment for clotting disorders is saving more and more lives. The rarity of these disorders coupled with the delicate processes for producing factors, however, makes treating these disorders extremely costly. As a result, insurance coverage is a major concern for patients and their families.

(5) It is thus the intent of the General Assembly through implementation of this Act to establish an advisory board to provide expert advice to the State on health and insurance policies, plans, and public health programs that impact individuals with hemophilia and other bleeding disorders.

(410 ILCS 420/2.5 new)

Sec. 2.5. Hemophilia Advisory Review Board.

(a) The Director of Public Health in collaboration and in consultation with the Director of Insurance, shall establish an independent advisory board known as the Hemophilia Advisory Review Board. The Board shall review, may comment upon, and make recommendations to the Directors with regard to, but not limited to the following:

(1) Proposed legislative or administrative changes to policies and programs that are integral to the health and wellness of individuals with hemophilia and other bleeding disorders.

(2) Standards of care and treatment for persons living with hemophilia and other bleeding disorders. In examining standards of care, the Board shall protect open access to any and all treatments for hemophilia and other bleeding disorders, in accordance with federal guidelines and standards of care guidelines developed by the Medical and Scientific Advisory Council (MASAC) of National Hemophilia Foundation (NHF), an internationally recognized body whose guidelines set the standards of care for hemophilia and other bleeding disorders around the world.

(3) The development of community-based initiatives to increase awareness of care and treatment for persons living with hemophilia and other bleeding disorders. The Department of Health may provide such services through cooperative agreements with Hemophilia Treatment Centers, medical facilities, schools, nonprofit organizations servicing the bleeding disorder community, or other appropriate means.

(4) Facilitating linkages for persons with hemophilia and other bleeding disorders.

(5) Protecting the rights of people living with hemophilia and other bleeding disorders to appropriate health insurance coverage be it under a private or State-sponsored health insurance provider.

(b) The Board shall consist of the Director of Healthcare and Family Services and the Director of Insurance or their designee, who shall serve as non-voting members, and 7 voting members appointed by the Governor in consultation and in collaboration with the Directors. The voting members shall be selected from among the following member groups:

(1) one board-certified physician licensed, practicing and currently treating individuals with hemophilia or other bleeding disorders;

(2) one nurse licensed, practicing and currently treating individuals with hemophilia or other bleeding disorders;

(3) one social worker licensed, practicing and currently treating individuals with hemophilia or other bleeding disorders;

(4) one representative of a federally funded Hemophilia Treatment Center;

(5) one representative of an organization established under the Illinois Insurance Code for the purpose of providing health insurance;

(6) one representative of a voluntary health organization that currently services the hemophilia and other bleeding disorders community; and

(7) one patient or caregiver of a patient with hemophilia or other bleeding disorder. The Board may also have up to 5 additional nonvoting members as determined appropriate by the Directors. Nonvoting members may be persons with or caregivers of a patient with hemophilia or a bleeding disorder other than hemophilia or persons experienced in the diagnosis, treatment, care, and support of individuals with hemophilia or other bleeding disorders.

No more than a majority of the voting members may be of the same political party. Members of the Board shall elect one of its members to act as chair for a term of 3 years. The chair shall retain all voting rights. If there is a vacancy on the Board, such position may be filled in the same manner as the original appointment. Members of the Board shall receive no compensation, but may be reimbursed for actual expenses incurred in the carrying out of their duties. The Board shall meet no less than 4 times per year and follow all policies and procedures of the State of Illinois Open Meetings Law.

(c) No later than 6 months after the date of enactment of this amendatory Act, the Board shall submit to the Governor and the General Assembly a report with recommendations for maintaining access to care and obtaining appropriate health insurance coverage for individuals with hemophilia and other bleeding disorders. The report shall be subject to public review and comment prior to adoption. No later than 6 months after adoption by the Governor and Legislature and annually thereafter, the Director of Healthcare and Family Services shall issue a report, which shall be made available to the public, on the status of implementing the recommendations as proposed by the Board and on any state and national activities with regard to hemophilia and other bleeding disorders.

(410 ILCS 420/4 rep.)

Section 10. The Hemophilia Care Act is amended by repealing Section 4.