(410 ILCS 420/0.01) (from Ch. 111 1/2, par. 2900) Sec. 0.01. Short title. This Act may be cited as the Hemophilia Care Act. (Source: P.A. 86-1324.)

(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 Department of Healthcare and Family Services. (1.5) "Director" means the Director of Healthcare and Family Services and the Director of Insurance. (2) (Blank). (3) "Hemophilia" means a bleeding tendency resulting from a genetically determined deficiency in the blood. (4) (Blank). (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) (Blank). (Source: P.A. 98-104, eff. 7-22-13.)

(410 ILCS 420/1.5) 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 to

coordinate State support for individuals with hemophilia and other bleeding disorders with the health insurance protections made available to all Americans under the Patient Protection and Affordable Care Act.

(Source: P.A. 98-104, eff. 7-22-13.)

(410 ILCS 420/2) (from Ch. 111 1/2, par. 2902) Sec. 2. The Department shall establish a program for the care and treatment of eligible persons by promoting the development of appropriate resources for their care and treatment and by providing financial assistance in accordance with the further provisions of this Act to eligible persons otherwise unable to pay for appropriate care and treatment. (Source: P.A. 80-859.)

(410 ILCS 420/2.5) Sec. 2.5. (Repealed). (Source: P.A. 96-790, eff. 9-25-09. Repealed by P.A. 98-104, eff. 7-22-13.)

(410 ILCS 420/3) (from Ch. 111 1/2, par. 2903) Sec. 3. The powers and duties of the Department shall include the following: (1) Develop standards for determining eligibility for

care and treatment under this program. Among other standards developed under this Section, persons suffering from hemophilia must be evaluated in a center properly staffed and equipped for such evaluation, but not operated by the Department.

(2) (Blank). (3) Extend financial assistance to eligible persons

in order that they may obtain blood and blood derivatives for use in hospitals, in medical and dental facilities, or at home. The Department shall extend financial assistance in each fiscal year to each family containing one or more eligible persons in the amount of (a) the family's eligible cost of hemophilia services for that fiscal year, minus (b) one fifth of its available family income for its next preceding taxable year. The Director may extend financial assistance in the case of unusual hardships, according to specific procedures and conditions adopted for this purpose in the rules and regulations promulgated by the Department to implement and administer this Act.

(4) (Blank). (5) Promulgate rules and regulations for the

implementation and administration of this Act.

Effective January 1, 2014, coverage under this Act shall be coordinated with the requirements of the Patient Protection and Affordable Care Act and eligibility under this Act shall be available only to individuals who have met their obligations under the Patient Protection and Affordable Care Act to obtain health insurance. For purposes of this Act, payment of a tax penalty for failing to obtain insurance is not considered fulfilling the obligation to obtain health insurance under the Patient Protection and Affordable Care Act. Coverage of blood and blood derivatives for use in hospitals, in medical and dental facilities, or at home shall be coordinated with the individual's health insurance plan. The Department of Healthcare and Family Services, the Department of Human Services, and the Illinois health insurance marketplace shall work cooperatively to assist persons enrolled for services under this Act to obtain health insurance coverage prior to January 1, 2014. On and after July 1, 2012, the Department shall reduce any rate of reimbursement for services or other payments or alter any methodologies authorized by this Act or the Illinois Public Aid Code to reduce any rate of reimbursement for services or other payments in accordance with Section 5-5e of the Illinois Public Aid Code. (Source: P.A. 97-689, eff. 6-14-12; 98-104, eff. 7-22-13.)

(410 ILCS 420/3.5) Sec. 3.5. (Repealed). (Source: P.A. 90-587, eff. 7-1-98. Repealed by P.A. 92-790, eff. 8-6-02.)

(410 ILCS 420/4) Sec. 4. (Repealed). (Source: P.A. 90-587, eff. 7-1-98. Repealed by P.A. 95-12, eff. 7-2-07.)

(410 ILCS 420/5) (from Ch. 111 1/2, par. 2905) Sec. 5. The Illinois Administrative Procedure Act is hereby expressly adopted and incorporated herein as if all of the provisions of such Act were included in this Act, except that in case of conflict between the Illinois Administrative Procedure Act and this Act, the provisions of this Act shall control. (Source: P.A. 80-859.)