HJ0037 96TH GENERAL ASSEMBLY

HJ0037 LRB096 12026 GRL 23879 r

HOUSE JOINT RESOLUTION

WHEREAS, Since 1949, the Hemophilia Foundation of Illinois has worked to improve the quality of life for over 1,800 Illinois residents and their families who are affected by inherited bleeding disorders; and

WHEREAS, Hemophilia is characterized by the absence of one of the several clotting factors necessary to control bleeding, with the standard care of treatment being the replacement of absent clotting factors necessary to control the bleeding; and

WHEREAS, In addition to serving people with hemophilia, the Foundation also provides services to Illinois residents with other types of bleeding disorders, including von Willebrand disease, which inflicts 1-2% of the general population; and

WHEREAS, Treatment for hemophilia requires regular intravenous infusions; without treatment, people with hemophilia face frequent, spontaneous bleeding episodes in their joints, causing swelling in the joints, muscles, internal organs, and brain; repeated bleeding episodes in joints results in a chronic degenerative arthritic condition, which often leads to frequent hospitalizations, permanent disability, and chronic pain; bleeding episodes involving internal organs and the brain can cause permanent damage, disability, and even death; severe bleeding episodes result in lost time at school and/or work, decreased quality of life, and the inability to perform basic living activities; and

WHEREAS, With proper care and access to comprehensive medical resources, people living with hemophilia can control bleeding episodes and can lead productive lives; federally funded hemophilia treatment centers provide comprehensive medical care to persons with hemophilia, von Willebrand disease, and other bleeding and clotting disorders; and

WHEREAS, The Medical and Scientific Advisory Committee of the National Hemophilia Foundation recommends recombinant factor products as the choice for persons with Hemophilia VIII and IX, the treatment of which is extremely costly; the Foundation has made a difference in the lives of such people by helping them with insurance questions, medical expenses, and keeping them informed about advances in treatment; and

WHEREAS, Although there is no cure for these genetic disorders, the Hemophilia Foundation of Illinois supports research in health care advancements to create safer blood products, giving persons with these diseases the ability to manage their condition and minimize chronic complications; and

WHEREAS, Hemophilia and other inherited bleeding disorders are not well understood by the general public; and

WHEREAS, Since 1972, Illinois has expressed its committed to proper care and treatment of children and adults with hemophilia and other related bleeding disorders through the enactment of the Hemophilia Care Program, as well as the recently reenacted Hemophilia Advisory Review Board in 2007; in addition, the 2004 resolution designating March as Hemophilia Awareness Month focused on enhancing the understanding and proper treatment of hemophilia and to encourage participation in activities to support programs to properly treat hemophilia; and

WHEREAS, Members of the Hemophilia Foundation of Illinois and its extended community of supporters across the great state of Illinois are celebrating Hemophilia Awareness Month by visiting Springfield to participate in a Legislative Advocacy Day at the Capitol on March 17, 2009; and

WHEREAS, The Hemophilia Foundation of Illinois is celebrating its 60th anniversary in 2009 to recognize its efforts in providing education, advocacy, and consumer services for the Illinois bleeding disorder community; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE NINETY-SIXTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, THE SENATE CONCURRING HEREIN, that we applaud and honor the Hemophilia Foundation of Illinois for its 60 years of dedicated, outstanding service to the Illinois bleeding disorder community; and be it further

RESOLVED, That we once again recognize and commemorate the month of March as Hemophilia Awareness Month in the State of Illinois; and be it further

RESOLVED, That a suitable copy of this resolution be delivered to the Hemophilia Foundation of Illinois as a symbol of our respect and esteem.