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1 | HOUSE JOINT RESOLUTION
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2 | WHEREAS, Since 1949, the Hemophilia Foundation of Illinois | ||||||
3 | has worked to improve the quality of life for over 1,800 | ||||||
4 | Illinois residents and their families who are affected by | ||||||
5 | inherited bleeding disorders; and
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6 | WHEREAS, Hemophilia is characterized by the absence of one | ||||||
7 | of the several clotting factors necessary to control bleeding, | ||||||
8 | with the standard care of treatment being the replacement of | ||||||
9 | absent clotting factors necessary to control the bleeding; and
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10 | WHEREAS, In addition to serving people with hemophilia, the | ||||||
11 | Foundation also provides services to Illinois residents with | ||||||
12 | other types of bleeding disorders, including von Willebrand | ||||||
13 | disease, which inflicts 1-2% of the general population; and
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14 | WHEREAS, Treatment for hemophilia requires regular | ||||||
15 | intravenous infusions; without treatment, people with | ||||||
16 | hemophilia face frequent, spontaneous bleeding episodes in | ||||||
17 | their joints, causing swelling in the joints, muscles, internal | ||||||
18 | organs, and brain; repeated bleeding episodes in joints results | ||||||
19 | in a chronic degenerative arthritic condition, which often | ||||||
20 | leads to frequent hospitalizations, permanent disability, and | ||||||
21 | chronic pain; bleeding episodes involving internal organs and | ||||||
22 | the brain can cause permanent damage, disability, and even |
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1 | death; severe bleeding episodes result in lost time at school | ||||||
2 | and/or work, decreased quality of life, and the inability to | ||||||
3 | perform basic living activities; and
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4 | WHEREAS, With proper care and access to comprehensive | ||||||
5 | medical resources, people living with hemophilia can control | ||||||
6 | bleeding episodes and can lead productive lives; federally | ||||||
7 | funded hemophilia treatment centers provide comprehensive | ||||||
8 | medical care to persons with hemophilia, von Willebrand | ||||||
9 | disease, and other bleeding and clotting disorders; and
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10 | WHEREAS, The Medical and Scientific Advisory Committee of | ||||||
11 | the National Hemophilia
Foundation recommends recombinant | ||||||
12 | factor products as the choice for persons with
Hemophilia VIII | ||||||
13 | and IX, the treatment of which is extremely costly; the | ||||||
14 | Foundation has made a difference in the lives of such people by | ||||||
15 | helping them with insurance questions, medical expenses, and | ||||||
16 | keeping them informed about advances in treatment; and
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17 | WHEREAS, Although there is no cure for these genetic | ||||||
18 | disorders, the Hemophilia Foundation of Illinois supports | ||||||
19 | research in health care advancements to create safer blood | ||||||
20 | products, giving persons with these diseases the ability to | ||||||
21 | manage their condition and minimize chronic complications; and
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22 | WHEREAS, Hemophilia and other inherited bleeding disorders |
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1 | are not well understood by the general public; and
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2 | WHEREAS, Since 1972, Illinois has expressed its committed | ||||||
3 | to proper care and treatment of children and adults with | ||||||
4 | hemophilia and other related bleeding disorders through the | ||||||
5 | enactment of the Hemophilia Care Program, as well as the | ||||||
6 | recently reenacted Hemophilia Advisory Review Board in 2007; in | ||||||
7 | addition, the 2004 resolution designating March as Hemophilia | ||||||
8 | Awareness Month focused on enhancing the understanding and | ||||||
9 | proper treatment of hemophilia and to encourage participation | ||||||
10 | in activities to support programs to properly treat hemophilia; | ||||||
11 | and
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12 | WHEREAS, Members of the Hemophilia Foundation of Illinois | ||||||
13 | and its extended community of supporters across the great state | ||||||
14 | of Illinois are celebrating Hemophilia Awareness Month by | ||||||
15 | visiting Springfield to participate in a Legislative Advocacy | ||||||
16 | Day at the Capitol on March 17, 2009; and
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17 | WHEREAS, The Hemophilia Foundation of Illinois is | ||||||
18 | celebrating its 60th anniversary in 2009 to recognize its | ||||||
19 | efforts in providing education, advocacy, and consumer | ||||||
20 | services for the Illinois bleeding disorder community; | ||||||
21 | therefore, be it
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22 | RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE |
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1 | NINETY-SIXTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, THE | ||||||
2 | SENATE CONCURRING HEREIN, that we applaud and honor the | ||||||
3 | Hemophilia Foundation of Illinois for its 60 years of | ||||||
4 | dedicated, outstanding service to the Illinois bleeding | ||||||
5 | disorder community; and be it further
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6 | RESOLVED, That we once again recognize and commemorate the | ||||||
7 | month of March as Hemophilia Awareness Month in the State of | ||||||
8 | Illinois; and be it further | ||||||
9 | RESOLVED, That a suitable copy of this resolution be | ||||||
10 | delivered to the Hemophilia Foundation of Illinois as a symbol | ||||||
11 | of our respect and esteem.
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