The meeting was called to order at 5:10 p.m. on Wednesday, July 13, 2005. 

MINUTES:

David Linney and Kathleen welcomed committee members and asked each member to introduce him or herself.

Strategic Planning

Kathleen shared the GLHF strategic planning process that took place last spring.  She indicated that advocacy is one of the five key initiatives.  She went on to say that although David Linney provides a great deal of advocacy on behalf of patients, that the Board determined developing a more formalized committee who can develop and implement an advocacy plan was the best route to take.

PACT

Kathleen mentioned that there is a grant opportunity for funding advocacy work.  There is $100,000 available to fund up to four grant proposals.  Kathy Glynn, GLHF grant writer will develop a proposal  that would include funding for education, Washington Days, contracting a lobbyist as well as other opportunities that would compliment the committee plan.

Past and Current Advocacy

David Linney informed the committee on past and current advocacy that he has been involved with.  This includes factor product coverage, articles for chapter and national newsletters, CCBD work and consultation with treatment centers, reimbursement in the market place, monitoring Medicaid and the Wisconsin Chronic Disease program.  David also mentioned that legislative work done last year with the Amish community.

Job Description

Mr. Linney discussed the job description for the advocacy committee and Kathleen went over the draft of goals and objectives for the committee.

Committee Operations

David indicated the committee functions should consist of both statewide and national advocacy.

Group Discussion

Several ideas were generated during group discussion on ideas and thoughtsfor the committee to focus on. 

·                     experts—political savvy

·                     The truth vs. myths

·                     Cookbook action plan-learning how to advocate

·                     Other chapter’s advocacy committees

·                     Consumer perspective—health insurance

·                     Know the issues

·                     Government/political versus industry/health insurance

·                     Consumer and community have strong, educated voice

·                     Face to face with the hemophilia community-very effective with politicians

Group Decision Making

Kimberly Haugstad agreed to co-chair the committee.  Kathleen will speak with David Osswald about being the other co-chair.

Kimberly agreed to meet with Kathleen and David to put the committee’s thoughts in a draft plan for the committee to review at the next meeting.

The next advocacy committee meeting is August 16, from 3:00-5:00 p.m. at the BloocCenter of Wisconsin.