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Press Release
GREAT LAKES HEMOPHILIA FOUNDATION SENDS
ADVOCATES TO MADISON FOR BLEEDING DISORDERS
(Milwaukee, WI, April 29 2009) –Great Lakes Hemophilia Foundation (GLHF)
sponsored a Legislative Day on April 29, 2009, empowering more than 60
adults and youth affected by bleeding disorders to speak with Wisconsin
legislators. GLHF coordinated this opportunity for its clients to speak
with their representatives about the high cost of treatment and
importance of continued state aid for the bleeding disorders community.
This year’s visit to Madison attracted the attention of Governor Jim
Doyle, who officially declared April 29 to be Great Lakes Hemophilia
Foundation Day.
A
bleeding disorder is one of the most expensive chronic disorders to
treat. Currently, the Wisconsin Chronic Disease Program (WCDP) and
Medicaid both provide much needed financial support for low income
individuals and families when faced with treatment costs not covered by
private insurance. For example, one client advocate shared his personal
story with his representative: he is disabled, living on a fixed income
with no private insurance coverage, and his treatment costs in 2008
totaled $650,000. Without Medicaid coverage, he would have no way to
afford his necessary treatments.
GLHF
provides its advocates with a morning of training, after which they take
their urgent message for continued coverage for chronic diseases to
their legislators. It is also imperative that all clotting factor
products, for which there are no generics, continue to be covered by
Medicaid. These products are pharmacologically and therapeutically
unique and must meet a very high standard of quality. Increasing costs
of health care and pharmacy products are making adequate health care
more and more difficult for those with chronic disorders to obtain.
GLHF
argues that maintaining or increasing Medicaid and WCDP aid dollars will
ultimately cost tax payers less than the alternative. Individuals with
severe bleeding disorders – if uninsured and denied state assistance to
cover treatment costs – will almost certainly become disabled. Because a
disability restricts a person’s ability to maintain employment, the
financial burden represented to tax payers to support the disabled
person and cover their expensive medical care is much greater than the
preventive dollars spent through Medicaid and WCDP.
Great
Lakes Hemophilia Foundation (GLHF) is a non-profit organization located
in Milwaukee, WI that provides education, outreach, financial
counseling, networking, and advocacy programs to individuals with
bleeding disorders and their families. GLHF has been supporting the
Wisconsin bleeding disorders community for 35 years, and continues to
provide much-needed assistance to roughly 2,000 individuals and family
members.
For more information, call (414) 257-0200 or visit
www.glhf.org.
Legislative Day Pictures
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