|
Great Lakes
Hemophilia Foundation’s Wisconsin Legislative Day
2011 Talking
Points
Introduction
·
Introduce yourself to the Legislator or Staffer and
explain that you are with Great Lakes Hemophilia Foundation’s
Legislative Day. (Give prepared folder to legislator or staffer)
·
Ask if the Legislator or Staffer is familiar with
hemophilia or other bleeding disorders. Share hemophilia info 101.
Quickly cover basics about:
Hemophilia is a rare, chronic bleeding disorder affecting 1
in 5000 males. Hemophilia occurs when clotting factor, usually
Factor VIII or IX, is missing or does not function normally. Those
with Hemophilia require life-long infusions of clotting factor
therapies that replace missing or deficient blood proteins, thus
preventing debilitating and life threatening internal bleeding.
Von Willebrand Disease is a bleeding disorder in which Von
Willebrand factor, a protein that works with Factor VIII, is missing
or does not function normally. Von Willebrand Disease affects both
men and women, impacting 1-2% of the population.
Women with Bleeding Disorders, typically with a factor
deficiency or Von Willebrand disease, are prone to heavy or
prolonged menstrual cycles and excessive bleeding after childbirth.
Wisconsin Hemophilia Treatment Centers (HTC’s) located in
Green Bay, La Crosse, Madison and Milwaukee provide medical care
to1840 patients with hemophilia, von Willebrand Disease and other
factor deficiencies.
Treatment and Treatment Costs
·
Walk through what happens when there is a bleed. Tell
your PERSONAL STORY (bleeds, what happens, how many treatments, cost
etc.)
·
Treatment requires expensive biotech drugs, clotting
factor concentrates, to either treat or try to prevent bleeding.
These drugs cannot be obtained through retail pharmacies, but
through specialty pharmacies. Clotting factor concentrate costs for
patients with severe hemophilia average $150,000 to $200,000 per
year, although some patients can exceed $300,000 up to $1,000,000.
·
Cost of one bleed after it has started and upon
treatment at an emergency room = $500,000/bleed.
Someone with severe hemophilia not treated preventatively will
experience anywhere from 2-6 bleeds per year. This easily adds up to
over $1,000,000 in one year. That does not include the cost of
degenerative joint disease and other medical conditions impacted by
the bleeds.
·
Treatment has come a long way- and through Hemophilia
Treatment Centers, GLHF and the exceptional care and education
provided, those with hemophilia/ or other bleeding disorders are
capable of leading a healthy and productive life.
State Issues
Explain that because now they know a little more about bleeding
disorders you are visiting for two specific reasons.
Continued access to and high coverage for these drugs through
Medicaid and the Wisconsin Chronic Disease Program is critical for
the bleeding disorders community. The current budget requires a
$494 million dollar cut in Medicaid. If treated early, and
properly, many in the bleeding disorder community can save the state
dollars by reducing costly hospitalizations preventing
complications.
REQUEST 1 - Adequate Funding for the Wisconsin Chronic Disease
Program:
Please MAINTAIN the current WCDP funding at $800,000. The WCDP helps
to pay for the uncovered costs of clotting factor concentrates,
based on need as a “last resort”, after all other payers have paid.
(The Wisconsin Chronic Disease Program also pays benefits for
chronic renal disease and cystic fibrosis.) WCDP is a proven long
standing program (over 25 years) that has enhanced the health care
for some of our most vulnerable citizens
REQUEST 2 - Concerns about Medicaid Changes (Co-pays, access,
coverage of all clotting factor concentrates and access to high
quality pharmacy care):
The current budget requires a $494 million dollar cuts that need to
be found by the state. We have huge concerns that this will
negatively impact the bleeding community. Because the treatment is
so expensive, increased premiums, co-pays, percentages or ceilings
can be devastating. It’s important that the different clotting
factor concentrates continue to be covered by Medicaid. There are
many “unknowns” right now, and we suggest that any short-term
savings would not make sense for the bleeding disorders community.
With adequate funding the long term savings far outweigh the short
term because with improved outcomes individuals have a decrease in
emergency room visits, and costly hospitalizations along with an
increase in employment capabilities that allow for private employer
insurance options.
Thank them for their time and consideration.
Offer yourself or the Foundation as a resource as they are making
these tough decisions in the state.
|
