ADVOCACY COMMITTEE
March 22, 2006

Members Present:  John Martin                    Kimberly Haugstad
                            Celine Caithamer             Katie Kralovetz (Conference Call)
                            Jeff Wade                        Shelly Mattson (Conference Call)

Members Absent:  Dave Peterson                Barb Dittrich
                             Larry Surgis

Staff Present:         Kathleen Roach              David Linney

Ms Haugstad called the meeting to order at 5:37 p.m.

Minutes

The Minutes from the January 11, 2006 meeting were moved for approval by Mr. Martin and seconded by Mr. Wade.  The motion was approved by unanimous vote.

Washington Days Summary

Mr. Martin, Ms.Haugstad, Ms. Mattson, Ms. Caithamer, Mr. Wade and Ms. Roach all participated in Washington Days and commented on the experience.  GLHF’s efforts were well organized.  Two GLHF groups approached different legislators and aides.  Overall GLHF representatives were well received.  Congressional aides recognized a few of us from the previous year.  The folders developed by Ms. Haugstad and Ms. Caithamer helped to tell our story.  The issue of increased CDC funding for HTCs was “dead in the water” because Congress is not approving any new funding due to severe budget constraints. The issue of nondiscrimination toward genetic testing was received more positively.  Congressperson Tammy Baldwin has signed on.  A “thank you” was sent to her.  “Thank you’s” were also sent to other congresspersons for the staff meetings along with a word of encouragement to sign on to the genetic nondiscrimination bill.  Comments about improvements for next year included:  evaluate successes and problems; make appointments earlier; and, consider a different approach based by party. 

Summary of Meeting with Lobbyist

Ms. Roach and Mr. Linney met with the lobbyist, Andy Franken of the Hamilton Consulting Group in Madison on January 20^th.   The issues of sole source providers and restricted formularies through Medicaid, Wisconsin Hemophilia Home Care Program and HIRSP were reviewed.  Mr. Franken provided insights about advocacy and how to work with government.  He focused on: understanding lobbying requirements; coalition building; key legislative leadership contacts; the importance of meeting with legislators; and, developing a one page GLHF Needs agenda.  Mr. Franken indicated that he was willing to speak with Advocacy Committee at no charge.  The Committee was amenable to his offer and would like to meet with him in the next 4- 6 weeks.

Discussion of fees from Mr. Franken will be discussed after the Committee determines the type of lobbying work it may require and what other lobbyists it may want to consider.

Per information obtained by Ms. Kralovetz, GLHF cannot spend more than 5% of our budget without having a substantial lobbying presence.  Per Ms. Roach, this requirement should not be an issue at this time.

There was consensus that GLHF’s Advocacy Committee will have a greater opportunity to impact issues on the state level rather than on the national level and we should therefore focus much more of our efforts on state advocacy.

There was also consensus that GLHF should target spring, 2007 to schedule a Madison Days, whereby GLHF constituents would meet with Madison legislators to provide information/education about important GLHF advocacy issues.  The Committee may consider a smaller “practice run” this fall in which a few GLHF constituents will meet with legislators.

The Committee agreed to follow-up with Ms. Caithamer’s lobbyist contact for Parkinson’s to get her input on developing a program of Advocacy.

Work Flow Template for 3 Targeted Advocacy Issues

• Additional funding for HTCs

While the funding issue is dead in Washington, The Committee determined that it is important to inform our constituency about this ongoing issue and to also touch base with Wisconsin HTCs  to determine the impact of flat funding and to possibly discuss other funding options. 

• Patient/gfamily interaction with HTCs and other medical providers

The Committee determined that this is an issue that will best need to be worked on by constituents and Wisconsin HTCs with Committee facilitation.

• Sole Source Providers

There was agreement that the Committee needs to do more research on this issue, including an update on developments nationally.

The Committee also thought it should consider adding Preferred Drug Listings (PDL’s) as an issue, as we may want to have at least 2 issues to discuss with Madison legislators.

The importance of “standards of care” criteria were emphasized as very important in advocating on the issues of sole source providers and PDL’s.

Advocacy at ACCESS

Advocacy is the theme of ACCESS.  Glenn Mones of NHF has agreed to be the keynote speaker.

The Committee would like to have a significant presence at ACCESS and will follow-up with Tammy Molter to coordinate.  The Committee, it’s member, its mission and advocacy issues will be promoted and input from the community will be solicited- perhaps through a Town Hall Meeting.

Advocacy Link on GLHF Website

The Committee agreed that it wants to develop an Advocacy Link on the GLHF website.  In doing so, NHF and other Chapter websites will be evaluated.  Kathy Berglund of GLHF will facilitate.

ADVOCACY TO DO LIST:

Wisconsin Medical Advisory Committee Meeting
April 5, 12 noon

1. Mr. Linney will join the conversation to discuss the advocacy portion with Ms. Roach.  Ms. Roach can give an overview of the Advocacy Committee and Washington Days.  Mr. Linney can discuss the issues we have discussed so far and ask for input from the medical directors.
2. The information gathered by Mr. Linney and Ms. Roach will be shared at the next Advocacy Committee meeting.

Wisconsin Days

1. Mr. Linney will contact Andy Franken and ask him to meet with us for an hour in the next 4-5 weeks.  GLHF will look for a mutually agreeable location and then let the advocacy committee know the date and time.  Ms. Roach will invite Board members and other committees to hear what he has to say. 
2. Ms. Caithamer will contact Parkinson’s Disease advocate to get ideas on what questions we should ask Andy Franken.

Web Page

1.      Ms. Roach will ask out Hemophilia Chapters about their web pages and see what they have to offer.

2.      Ms. Roach will share this information with Mr. Martin and Ms. Haugstad.

3.      Ms. Roach, Mr. Martin and Ms. Haugstad will discuss web page with Kathy Berglund, GLHF Web designer.

4.      GLHF web page (in process) will be shared at the ACCESS meeting in June.

ACCESS

1.      Mr. Linney, Mr. Wade and Ms. Mattson will form a subcommittee and discuss a 45 minute presentation at ACCESS focused on our advocacy efforts

2.      Mr. Linney  will check with Tammy Molter on what time we will have available for presentation.

3.      Ms. Caithamer suggested a power point presentation on who we are, what we have been doing, Washington Days, how to get involved in advocacy,

And end with Washington Days

Ms. Haugstad suggested having part of the session interactive to get input from community members on their advocacy needs

     4.  Presentation will be ready for the June 17/18 ACCESS meeting.

The meeting was adjourned at 7:35 p.m.