November 2, 2005 GLHF Advocacy Committee Meeting Minutes

 Members Present:   Jeff Wade, Kimberly Haugstad, Celine Caithamer, Katie Kralovetz,  Shelly Mattson

 Members Absent:  Barb Dittrich, Dave Osswald, Dave Peterson

 Staff Present:  Kathleen Roach and David Linney

 Ms. Haugstad called the meeting to order at 5:35 p.m.

8/17/05 Meeting Minutes  The minutes from the August 17^th meeting were reviewed and approved by unanimous vote.

Committee Member Reports on “Other Group” Advocacy Practices

Ms. Roach contacted the Delaware and New Jersey chapters of NHF via E-mail, but was not able to obtain other information beyond what we already had regarding both states’ well- publicized legislative advocacy efforts. 

Mr. Linney contacted the Michigan (Ivan Harner) and Georgia (Jeff Cornette) chapters of NHF.  Michigan had hired a lobbyist, but determined they could do a better job themselves.  Michigan monitors what’s going on every day through a paid network online legislative update service.  Michigan is active monitoring Medicaid and Children with Special Health Care Needs and has coordinated having consumers and providers attend legislative hearings.  The Michigan chapter is also establishing a new committee- the Public Policy/Long Range Planning Committee.

Georgia has had a paid lobbyist for the last 15 years to try to assure that the state continues its legislation to pay for factor products for the uninsured.  There has not been much interest from patients to form an advocacy group through the chapter. The major concern that Georgia has with NHF on a national level is the lack of an advocacy agenda.

Ms. Caithamer suggested that the Committee may want to invite the Parkinson’s Disease lobbyist to one of our next meetings to talk about successful lobbying practices.

Review of Documents  The two documents that had been distributed, “Giving A Voice to Parkinson’s” and “Winning on Issues:  How to be a successful citizen lobbyist” were reviewed and discussed.  The Committee agreed that it would be helpful to take key sections from the two documents that provide legislative references and key generic “how to’s” to lobbying and begin the development of GLHF’s own lobbying document.  Ms. Roach agreed to take this project on and will assign some of the compilation duties to GLHF’s administrative assistant, Dorothy Smith.

One other point was made. We need to understand who can lobby and what lobbying involves as representatives of GLHF advocate on behalf of GLHF and the individuals we serve.

Scheduling/Targeting of Priority Issues   In targeting and prioritizing advocacy issues, the following should be considered:

·        Some state issues go through the legislature and others do not (i.e. through Departments of the state government)

·        Some federal issues go through the legislature and others do not (i.e. through Departments of the federal government)

·        Nationally GLHF is limited as an advocate, as we represent only one state.  There are many other state organizations that represent bleeding disorders as well as national organizations (NHF, Hemophilia Federation of America, COTT).

·        GLHF can have more direct and significant impact on the state level.  (Therefore, greater emphasis in general may need be considered on the state level ) 

·        An issue in another state may not be an issue for Wisconsin.

·        There is a difference between an issue affecting one client and an issue that affects a number of clients.  GLHF will provide individual service (which may involve advocacy) for the one client and may consider advocating on broader policy basis for an issue that affects a number of clients.

Some Advocacy Issues for Consideration

·        Sole source providers

·        Restricted pharmacy formularies involving factor products

·        Social Security Listing of Impairments

·        Increasing dollar support for HTCs 

The Committee may need to get the input of HTCs and develop policies or positions in advance in anticipation of a development that may negatively impact our constituency so that we can be better prepared to advocate.

The Committee agreed to contact others to see what advocacy issues they deem important.  Ms. Caithamer will contact manufacturers of factor product; Ms. Roach will contact home care companies and Mr. Wade and Ms. Mattson will contact other NHF youth leaders nationally.  Mr. Linney will evaluate how three state programs (HIRSP, The Wisconsin Hemophilia Home Care Program and the Wisconsin Medicaid formulary) may be impacted by change.  Reports will be made back to the Committee at our next meeting.

Approval of Best Practices Model   The “Work Flow” Process Model developed by Ms. Haugstad was reviewed by the Committee and approved in concept. It will be considered more fully after more information is obtained about advocacy issues and prioritization of those issues along with methods of effective advocacy.

The next meeting is scheduled for January 11, 2006 at 5:30 p.m. at the Blood Center of Wisconsin.