March 19, 2009
A growing number of people living with primary immune deficiencies, alpha1-antitrypsin deficiency, hemophilia and von Willebrand disease are experiencing problems accessing their medically appropriate therapies and services.
This is due in large part to cost-containment measures by state Medicaid and other public programs and private insurers. These patients and their families have learned that politics is not a spectator sport. They have made advocacy a primary focus.
The patient organizations have joined forces with providers and industry to tackle the complex legislative and regulatory policy issues that affect quality of care and provide access to their lifesaving therapies so they can lead productive lives. Standards of Care legislation offers protection to people living with these rare genetic disorders.
CSL Behring Public Affairs has made it a priority to join with patient advocacy organizations across the United States to pursue state-based Standards of Care legislation ensuring access to all plasma-derived therapies and recombinant analogs, including necessary ancillary services.
The drive for Standards of Care began with the passage of model legislation in the state of New Jersey in 2005. Pennsylvania and Minnesota followed with bills introduced in 2007. In 2008, the number of states pursuing Standards of Care grew to include California. In 2009, more states intend to continue this trend. Alabama, Missouri and Texas are in discussions with legislative leaders; California and Indiana are exploring regulatory implementation; and Pennsylvania, Massachusetts, Connecticut and Minnesota are introducing legislation.
Elected and appointed officials, lobbyists and historians often warn that changing public policy takes commitment, hard work, patience, persistence, perseverance, diligence and even luck. Pursuing Standards of Care legislation is no exception.
Of course, momentum can help as well. In Minnesota last spring, Standards of Care initiatives were infused with new energy when a coalition of patient advocates from across the state attended a legislative day in St. Paul, Minnesota.
Minnesotans who rely on plasma protein therapies, their families and representatives from industry joined forces to educate lawmakers about rare chronic diseases. They shared their personal stories with legislators and educated them on the importance of access. Every participant played a vital role in advancing Standards of Care.
As legislators listened to their stories, the participants were empowered to continue to reach out and build awareness. Some of the participants even visited their legislators and contacted candidates during the summer months.
Patient advocates had become a resource to their elected officials on issues of health care, rare genetic diseases and access. The Senate and House authors were pleased to introduce newly drafted Standards of Care in 2009 because of the persistence and hard work of patient advocates from the Immune Deficiency Foundation and the Alpha1 Association.
Working together, patients, families, providers and representatives from industry can influence the policy issues affecting quality of care.
Learn more about Standards of Care legislation by reading the “Key Issues Dialogue: Standards of Care Legislation.”
This dialogue features Minnesota resident, Kathy Antilla,Director of volunteer programs at the Immune Deficiency Foundation, who leads advocacy for this legislation in her state. Also featured are Ann Rogers, Executive Director of the Delaware Valley Chapter of the National Hemophilia Foundation (NHF), Val Bias, Executive Director of NHF and Jerry Powell, M.D., Director of the hemophilia treatment center at the University of California, Davis Medical Center.
Volunteers from the Minnesota immune deficient, alpha1 and bleeding disorders communities pose with the Minnesota bill sponsors, Senator Kathy Sheran and Representative Kim Norton at the 2008 legislative day in support of Minnesota Standards of Care
