Advocacy efforts have been in
full swing at Great Lakes Hemophilia Foundation. To date, 16
individuals and their family members have committed to meeting with
their local legislator in-district to tell their story, educate and
inform them about bleeding disorders, and discuss important issues
concerning the bleeding disorders community. The senators include:
Sen. Jon Erpenbach(D-Middleton), Sen. Mary Lazich (R-New Berlin),
Sen. Fred Risser (D-Madison), Sen. Judy Robson (D-Beloit), Sen. Russ
Decker (D-Weston), Sen. Scott Fitzgerald (R–Juneau), Sen. Tim
Carpenter (D–Milwaukee), Sen. Alberta Darling (R-River Hills), Sen.
Robert Wirch (D-Salem), Sen. Pat Kreitlow (D-Chippewa Falls), and
Sen. Joseph Leibham (R-Sheboygan). The representatives include: Rep.
Sandy Pasch (D-Whitefish Bay), Rep. James Soletski (D-Green Bay),
Rep. Steve Kestell (R-Elkhart Lake), and Rep. Joan Ballweg
(R-Markesan).
The goal of the meetings is to
develop and/or strengthen
relationships with legislators in
the event legislation is presented
in the future that may positively or
negatively affect individuals with
bleeding disorders. The meetings
will also provide an opportunity to
remind legislators about the
importance of the following issues:
Health Insurance Risk Sharing
Plan (HIRSP), which offers
health insurance to Wisconsin
residents
who either are unable to find
adequate health insurance
coverage in the private market
due to their
medical conditions or who have
lost their employer-sponsored
group health insurance.
Wisconsin Chronic Disease
Program (WCDP), funded entirely
by state dollars, which offers
assistance
to Wisconsin residents with
chronic renal disease,
hemophilia, and adult cystic
fibrosis. The WCDP
pays health care providers for
disease-related services and
supplies provided to certified
participants
after all other sources of
payment have been exhausted.
Prophylaxis, or the preventive
measure against spontaneous
bleeds by infusing factor
product on a
consistent and proactive basis
may appear to be expensive, but
actually proves to be more
cost-effective in the long-run
by minimizing long-term joint
damage and the ensuing
disability of patients with
bleeding disorders that treat on
an episodic basis.
Advocates will also inform
legislators about the bleeding
disorders community’s position
regarding a Sole Source Pharmacy
Provider, that is a designation of a
pharmacy contracted without
competition to be the sole supplier
of factor product. Although a sole
source pharmacy provider may be
appealing for its administrative
ease, in the long run an inability
for patients to choose among various
clotting factor products may cause a
variety of negative consequences.
These include reducing market
competition, elevating the cost of
factor, and potentially increasing
the likelihood of expensive and even
life-threatening complications, such
as inhibitors.
If you are interested in meeting
with your local legislator, Great
Lakes Hemophilia Foundation will
help you set up a meeting. Even if
you have had no prior experience in
advocacy—not to worry. If you have a
story to share, then you are already
an advocate! GLHF is happy to help
you out with the rest.
If you have met with your
legislator, please
email or call GLHF to let us
know how the meeting went. This will
help us keep our advocacy files
up-to-date.
The material provided in Headline
News is for your general information
only. GLHF does not give medical
advice or engage in the practice of
medicine. GLHF under no
circumstances recommends particular
treatment for specific individuals,
and in all cases recommends that you
consult your physician or treatment
center before pursuing any course of
treatment.
