(410 ILCS 420/1.5)
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.)