In California...

Panelist and sponsors of the California information hearing on VWD. Back row (left to right): Val Bias, Kim Isenberg, Nikki Rickard, Senator Gloria Negrete McLeod (chair of the Women’s legislative Caucus). Jerry Powell M.D., Mary Wiberg (Executive Director, CA Commission on the Status of Women). Front row (left to right): Heather Huszti, Emilia Donovan, Kim Shafer.

Organizations that effectively influence public policy develop partnerships with the government. In this way policymakers and their staff seek the advice and input of these partners as they deliberate changes to public policy.

The Hemophilia Council of California is a model for developing partnerships with the government of California. For nearly two years, CSL Behring has been collaborating with the Council to identify new partners and build new relationships in order to advance Standards of Service legislation (California’s version of Standards of Care).

In February 2008, these efforts culminated in an Informational Hearing on VWD at the State Capitol in Sacramento hosted by the California Commission on the Status of Women and the California Women’s Legislative Caucus. The hearing room was packed with legislative staff, interested parties and the Chair of the Women’s Legislative Caucus, Senator Gloria Negrete McLeod.

The purpose of the hearing was to increase awareness of VWD among elected female California officials and their staff, to help them understand the challenges women living with VWD face, to build support for standards of care and, ultimately, to build new partnerships in the California legislative process.

	Mary Wiberg (wearing red blazer) chairing the information hearing on Von Willebrand Disease at the California state Capitol.

The hearing was moderated by Mary Wiberg, Executive Director of the California Commission on the Status of Women. Ms. Wiberg posed questions throughout to the panelists as did legislative staffers who were in attendance. Materials for the event were provided through Project Red Flag. Seven panelists were involved in the hearing to discuss VWD and how it impacts individuals and families. The panel was comprised of two women who told their stories of living with VWD; the director of a hemophilia treatment center who spoke about the history, condition and diagnoses of VWD; an OB/GYN who shared her experience treating women and learning about VWD; a psychologist who shared information about the psychosocial impacts of living with VWD; a nurse who talked about treating VWD; and the Executive Director of the Hemophilia Council of California who spoke about the Council and chapter activities supporting people with VWD.

The hearing was a great success with the establishment of new working relationships. The Hemophilia Council of California, individuals affected by VWD, and CSL Behring created new partnerships with policy-makers and their staff. Increased awareness of VWD will help enact public policies that will ensure improved diagnosis and management of von Willebrand disease.

Many Thanks!
To the people who worked tirelessly to enact this hearing. The individuals include: Mary Wiberg and the staff of the California Commission on the Status of Women, Senator Gloria Negrete McLeod, Liz Fuller and Bryn Sullivan at the California Legislative Women’s Caucus, and committee panelists Nikki Rickard, Emilia Donovan (and Emilia’s mom, Beth), Dr. Jerry Powell, Dr. Blanca Solis, Heather Huszti, Kim Shafer and Val Bias. Without their involvement, this event would never have taken place.

Thanks also to Val and the Hemophilia Council of California Legislative Consultant Terri Cowger Hill for their advice and counsel in the development and implementation of this Hearing.

Thanks to Anna DeSimone of NHF and the good folks at HANDI for supplying the materials and lastly to my colleagues at CSL Behring; Bill Carroll, Corey Parker and Scott Vollet.

advocacy@cslbehring.com

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