Across nations, as patients, we have firmly established our right and duty to participate in decision-making at the highest levels of government.
 A high level of patient involvement within the national health system is a common feature of sustainable national hemophilia programs. Success in many countries, including within the Global Alliance for Progress, has been achieved by integrating national patient organizations within national hemophilia programs, public health oversight committees, and in the selection of treatment products. Helping our member organizations achieve this involvement is a WFH goal.
Blood safety is a shared responsibility of many diverse stake holder groups including national patient organizations. |
To ensure the sustained and continued development of treatment, we support the establishment of a National Hemophilia Council within national hemophilia programs, and the involvement of patient representatives on the council. Typically, a council should oversee the program, develop treatment protocols, ensure transparency in decision-making, and guarantee that hemophilia remains prominent on the national health agenda.
In addition, an increasing number of our member organizations now have a voice within their national tender process where the decision-making on the selection and purchase of treatment products occurs. Countries around the world have embraced patient representation including Bosnia, Brazil, Canada, Ireland, Lebanon, Thailand, and Tunisia.
Given the importance of virally safe blood, patients also often adopt the role as guardian of the blood system. The HIV and hepatitis C crisis taught us that blood safety is a shared responsibility of many diverse stakeholder groups including national patient organizations. The involvement of patients instills confidence and transparency in the regulatory system.
Today, the national blood systems of many countries have developed such collaborative decision-making processes including patients. Patients participate as expert advisors with the Ministry of Health and Welfare Advisory Committee on Blood Products in Japan, U.S. Secretary of Health and Human Services Advisory Committee on Blood Safety and Availability, Transmissible Spongiform Encephalopathies Advisory Committee in Australia, and Canadian Hemovigilance Committees.
Similarly, the World Health Organization has also endorsed the participation of non-governmental organizations such as national hemophilia associations to serve on National Committees on the Clinical Use of Blood.
However, given the risk of exploitation, political manipulation, or mere ceremonial inclusion, it is vital that patient representatives maintain independent judgment and always act in a way that will earn the confidence of the public and patients they represent. The WFH has training guides and programs to help prepare our national members for this important role.
There is strength in numbers, so we should also build relationships with other patient groups dependent upon plasma-based therapies such as those with Alpha-1Antirypsin Deficiency, Primary Immune Deficiency, and Guillain-Barre Syndrome. These alliances within a country or region provide a forum for the regular exchange of information with government officials and industry representatives. The WFH has established a similar alliance globally. Structured and planned consultations build trust, a framework for collaboration and communication network, which will be vital in the event of a future crisis.
Over the years, people with hemophilia have increasingly, and by necessity, taken control of their treatment. As patient representatives, it is our duty to be involved and our right to be heard within the decision-making process of our governments— our future depends upon it.
Mark Skinner
WFH President
Hemophilia World, October 2007
Last Updated: February 2008 |
