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SEPTEMBER 14, 2007 GLHF ADVOCACY COMMITTEE MEETING MINUTES
Conference Call
Members in Attendance: Barb Dittrich, Ron Straus, Darcy Zwier, Stacy
Brault, Fred Tamms, Steve McMurtry
Members Absent: Gina Siolka, John Martin, Celine Caithamer
Staff in Attendance: Kathleen Roach, David Linney
The meeting was called to order at 5:35 p.m.
8/16/07 Minutes The minutes from the August 16, 2007 were moved for
approval by Ms. Brault and seconded by Mr. Straus and then approved unanimously
by the Committee.
Youth Ambassador Program Ms. Roach reported that the Youth Ambassador
Program will be held September 22nd and 23rd at the
Country Springs Hotel in Waukesha. Ms. Mattson and Rich Pezzillo from the Youth
Leadership Institute of NHF will lead the program. Thirteen Wisconsin youths
are registered to participate. The Program will focus upon: 1) Team Building;
2) Advocacy; 3) Fund Raising; and, 4) Public Awareness. A comment was made that
some of GLHF youth are interested in being members of GLHF Committees.
8/29/07 Employee Rights Video Conference Committee members who
participated in the Conference thought that the Conference was a success
and praised the video format as most of the state could access the program with
minimum travel time. Ms. Brault commented that handouts were not available in
Green Bay and thought that there was too much time spent on the first topic and
not as much time given to the final three topics. Another video conference will
probably be planned for early 2008. One topic may be health insurance- possibly
to be given by GLHF Board member Brandon Young who is a health care attorney.
Employee rights and health insurance may be topics that may be included in the
next Family Fun and Education Weekend.
Green Bay Advocacy Core Team (ACT) Report Ms. Brault reported that ACT
handed out surveys at the Green Bay picnic in August. The surveys provided
options for consumers to get involved with advocacy, including meeting with
state legislators and writing letters and making phone calls to
legislators. The survey also asked about advocacy issues. The responses
focused on 3 issues: lifetime caps; the cost of health insurance premiums; and,
emergency medical care. Four Green Bay consumers have thus far signed up for
Madison Legislative Day. Ms. Brault also reported that she, Katie Kralovetz
(the Executive Director of the Hemophilia Outreach Centre) and Shannon Krystof
had a very positive meeting with Senator David Hansen of Green Bay in which the
needs of individuals with hemophilia and von Willebrand disease were discussed.
HIRSP Consumer Advisory Council Mr. Linney reported that Chad Renly, a
Madison member of the bleeding disorders community and advocate, applied to be a
Council member but was turned down because all Council positions are currently
filled. HIRSP will keep Mr. Renly’s application on file.
Medicaid Factor Product Guideline Draft Mr. Linney reported that the
Division of Health is still working on the next draft of the document and will
forward it to GLHF and Wis. HTCs for review and comment after the draft has been
completed.
Patient’s Guide to Advocacy Ms. Dittrich led discussion about the
benefit of creating an advocacy guide for patients and particularly new
patients. There was consensus that a guide was a good idea and that it will be
important to determine what information should be included. As there are so
many different areas of advocacy and so much information, it was generally
agreed that a question and answer format with references for additional
follow-up of information would be the best format. Ms. Dittrich asked that
Committee members E-mail her with questions.
Wisconsin Legislative Day Ms. Roach reported that Wisconsin
Legislative Day in Madison will be November 7th and that GLHF is
hoping to have at least 50 advocates participate, including GLHF’s youth
leaders. Kathleen distributed a promotional flier for participants to register,
which includes the schedule of the day’s events. The fliers will go out in the
mail on September 14th. Ms. Roach is meeting with Andy Franken (GLHF’s
lobbyist) and Valery Gallagher (Director of Baxter’s Government Affairs) in two
weeks to further coordinate the day. Ms. Roach also indicated that GLHF
will look into renting vans to transport Green Bay and Milwaukee participants.
Standard of Service Document Mr. Linney had distributed the latest
revision of the Standard of Service for providers of clotting factor
concentrates document draft to Committee members previously. The original GLHF
document was presented to NHF’ Medical and Scientific Advisory Council (MASAC)
in October, 2006 and then has been reviewed by the NHF Public Policy Committee
in March and August, 2006. Final edits will be received and processed by Glenn
Mones, NHF’s V.P. of Public Policy, before being presented to MASAC in
November. The document was reviewed and edited by the Committee. Mr. Linney
will compile the edits and forward the document to Mr. Mones.
Next Meeting The next meeting of the Committee will be October 11th
at 5:30 via conference call.
The meeting was adjourned at 7:00 p.m.
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