ADVOCACY COMMITTEE
January 11, 2006

The meeting was called to order at 5:30 p.m.. on Wednesday, January 11, 2006 

MINUTES:

Ms. Haugstad called the meeting to order at 5:30 p.m.  The minutes from the November 2, 2005 meeting were moved for approval by Ms. Mattson and seconded by Ms. Haugstad.  The motion was approved by unanimous vote.

Committee Reports

Several committee members were asked at the November meeting to make calls to industry reps. and to the youth leadership committee to learn what they are hearing about advocacy issues in the bleeding disorder community.

Youth Leadership- Outside of the issues that were raised at the November advocacy committee meeting, no additional issues were generated.

Home Health Care- Kathleen contacted Caremark, BioRx, Coagulife and Corum.  She heard from BioRx and it was shared that Life Time Caps is an issue.  Corum also responded by sharing that they have their own advocacy committee that addresses issues and that both life time caps and Medicaid reimbursement were issues.

Pharmaceuticals- Celine stated that the pharmaceutical companies are hearing many of the same issues that were addressed during the November advocacy meeting including: sole source provider, restricted pharmacy formularies involving factor products, social security listing of impairments and increasing dollars for HTC’s.

Kathleen also shared that NHF is addressing the issues of lifetime caps, genetic nondiscrimination legislation and additional financial support to HTC’s.

Discussion of Advocacy Issues

Ms. Haugstad listed the issues the committee has generated.  The list includes:

1. Sole Source Provider           

2. Restricted pharmacy formularies involving factor product

3. Social Security listing of impairments definition of disability for patients with Hemophilia and      Vwd.   

4. Hepatitis lawsuit for patients with Hepatitis C

5. Increasing $$ to support HTC’s

6. Patient advocacy needs  interacting with HTCs and othe medical providers

7. Genetic nondiscrimination bill        

8. Funding for women’s research including thrombosis and thrombophilia

Incorporate issues into the flow chart process

 Ms. Haugstad explained the “work flow” template hand-out to committee members and suggested taking the different issues through the process template.  This information is attached to the agenda.  After much discussion the committee agree to focus on three issues:  

1.Sole Source provider (Both a federal and state issue)

2. Additional funding for Hemophilia Treatment Center (federal issue) and

3. Patient interaction with HTC’s and others (GLHF and HTC’s issue). 

The committee also agreed if other issues come to the forefront that the additional issue(s) would take priority.  The committee went through the list of questions on the work flow sheet for the three issues (information attached to the minutes).  At the next committee meeting we will discuss the next steps on the work flow template including research/analysis—report finding—determine action plan—implement action plan—measure success.

Advocacy Committee at ACCESS

ACCESS 2006 will take place in Madison, WI the weekend of June 17/18.  The theme of the conference will be on advocacy.  David Linney will contact Glenn Mones from NHF to ask him to be the keynote speaker at the event.  Tammy Molter, program services coordinator has asked the advocacy committee to provide some type of educational piece during the conference.  The committee agreed that it would be great to participate.  Other advocacy ideas for ACCESS include bringing a state legislator in since the conference is in Madison.  Jeff Amond, social worker at the Madison HTC has a few contacts with groups that may be ideal for the advocacy theme.

NHF Advocacy (Washington Days)

The committee discussed at length whether is was a good idea to attend Washington Days based on last year’s event and NHF being disorganized.  The committee agreed that if we go, we need to be proactive and go organized without the assistance of NHF.  Washington Days will take place March 1-3.  The committee also agreed that we would focus on a national issue that would also affect us at the state level such as asking for additional funding for HTC’s.  We would not necessarily address all the issues NHF brings to the event.  Because of limited funding a small group will attend this year:  Kathleen Roach, Celine Caithamer and Shelly Mattson.   All committee members will participate working with our state legislators over the next 12-18 months.

Citizen Lobby Handbook

Kathleen asked all committee members to review the handbook and give their input at the next meeting.

GLHF Advocacy Web Site

GLHF has a web site page.  Currently it is very basic with the information listed.  Kathleen has asked our web person to add a link to the NHF advocacy web site as well as include a link to the advocacy committee meeting minutes and agendas.   The web page is an area for additional information and links.  Further discussion and creative ideas will need to be generated by the committee.

NHF Advocacy Information

All committee members were provided information from the NHF advocacy web site page.  Kathleen will continue to provide this information at future advocacy meetings.

The meeting adjourned at 8:00 p.m.

NEXT MEETING: WEDNESDAY, MARCH 22, 5:30-7:30 P.M

AGENDA ITEMS: Possible presentation by lobbyist, continue to develop work flow process template for the three issues, reaction to citizen lobby handbook, outcome from Washington Days, web site, ACCESS discussion.

HOMEWORK ASSIGNMENT: Review GLHF Advocacy Citizen Lobby Handbook