Invitation to Join as an Organizational Member
Hepatitis B and hepatitis C are both viruses that damage the liver, and can cause debilitating symptoms, liver disease and early death. Hepatitis B and C often go unrecognized, undiagnosed and untreated for years in those infected. Hepatitis B and C are poorly understood with inadequately funded research, poorly supported prevention initiatives and limited access to treatment, care and support. Furthermore, stigma associated with hepatitis compounds poor health outcomes.
In Canada, both provincial and federal strategies for coordinating the research and prevention of hepatitis B and C and the care, treatment and support of people at risk of or living with hepatitis B and C have been too narrow in scope, inconsistently adopted and inadequately funded. Only recently has there been a renewed energy in different parts of Canada to refocus the response to hepatitis B and C.
The Canadian Coalition of Organizations Responding to Hepatitis B and C unites organizations and individuals to focus increased attention on the response to hepatitis B and C–diseases that negatively affect the quality of life of up to 600,000 Canadians and their families, friends, caregivers and communities.
Our goal is to see federal, provincial and territorial governments demonstrate their commitment to hepatitis B and C prevention, care, treatment, support and research with funding proportionate to the impact and burden of this health issue.
Specifically, we ask federal, provincial and territorial governments to adopt a fully funded, coordinated national strategy by 2012 that:
- Promotes prevention of both hepatitis B and C through expanded education, immunization and harm reduction programs all across Canada.
- Improves access to comprehensive care and treatment programs in all areas of the country.
- Increases knowledge and innovation through interdisciplinary research and surveillance to reduce and monitor the burden of both hepatitis B and C on Canadians.
- Creates awareness about risk factors, stigma and the need for testing among the general population and at-risk groups.
- Builds capacity through training and recruitment of qualified service providers and health professionals.
- Supports communities and community-based groups in developing, delivering and evaluating peer-driven and focused initiatives.
These “Asks” complement the six global “Asks” formulated by the World Hepatitis Alliance which are:
- Public recognition of chronic viral hepatitis as an urgent public health issue
- The appointment of an individual to lead Government strategy nationally
- The development of a patient pathway for screening, diagnosis, referral and treatment
- Clear, quantifiable targets for reducing incidence and prevalence
- Clear, quantifiable targets for reducing mortality
- Clear, quantifiable targets for screening
The Coalition is open to any organization, group or individual concerned with hepatitis B and/or hepatitis C that has formally indicated support of the Coalition’s goals. There is no fee for joining and no obligation to devote staff or financial resources. Members will be notified of Coalition goals and activities, have the opportunity to provide feedback on and contribute to those goals and activities and participate in a Coalition Steering Committee (described below).
Coalition Organizational Membership
To join as an organizational member, an organization fills out the attached membership form and acknowledges support for the goals and intent of the Coalition, and agrees to participate in the activities of the Coalition, as follows:
- Show public support for coalition goals by appearing on a public list of Coalition members that will be shown to people including but not limited to policy makers and members of the media.
- Periodically ask your members to act. Ask your leaders and members to participate in occasional phone, email and mail campaigns, public events, visits or other events/activities organized by the Coalition to influence policy decisions.
- Participate in the appointment, election or approval of Steering Committee members. All Steering Committee meetings are open to organizational members.
Organizational members will retain official voting rights, although the decision-making process is currently consensus-based.
We ask that your organization or group’s authorized decision-making body review the goals, intent and activities of the coalition and indicate agreement with them on the membership form.
Individuals Participation in the Coalition
Individuals concerned about hepatitis C and B who are not affiliated with an organization are invited to have their names included in the Coalitions email list. They would then receive information about campaigns, opinion surveys from the Coalition, event announcements and other related information.
Future ways to participate in the Coalition could include web-based discussion forums and other ways of communicating and interacting around hepatitis B and C issues, concerns and successes.
Coalition Structure
A Coalition Steering Committee will coordinate the Coalition’s efforts and activities and keep the membership informed of the Steering Committee’s work. At this time any member can join the Steering Committee. At such time the group becomes too large to work effectively, the Coalition will redefine its operating structure.
All members will be kept informed of the Coalition’s activities and progress.
Initial Activities (April – June 2010):
To meet the goals outlined herein, the Coalition has proposed the following short-term tasks:
- Establishing the Coalition, striking the Steering Committee and building its membership
- Promoting the 12 Asks and generating action on issues described therein
Future Activities and Roles:
To maintain momentum and further the response to hepatitis B and C in Canada, the Coalition has identified future activities and roles that may take priority:
- Setting up a website and blog as a primary communication tool, where the Coalition and its activities can be promoted and updated, and members can share experiences, successes, challenges and concerns about hepatitis-related issues.
- Acting as a hepatitis B and hepatitis C consultant group for government, government agencies, health policy makers and industry representatives.
- Acting as a forum for members to spotlight hepatitis B or C concerns or events.
- Providing collective response to issues and concerns raised by the membership.
To join or for more information, fill out the Membership Form, or contact:
Canadian Coalition of Organizations Responding to Hepatitis B and C
c/o Deb Schmitz, Hepatitis C Council of BC. PHONE: 604 886 9539 FAX: 1 888 856 5882
E-mail: canadahepbccoalition@gmail.com
For media inquiries, please go to the Coalition Members page and directly contact the group (or groups) which interest you.