Archive for the ‘Uncategorized’ Category

New cures for hepatitis C offer hope, but at what cost?

Tuesday, July 22nd, 2014

As we mark World Hepatitis Day (July 28th), people living with hepatitis C virus (HCV) have reason to feel hopeful. New cures for HCV are now available, and more effective treatment options will hit the market in the future. Despite the increased hope, there is concern. New cures are very expensive, raising questions about patient access to treatment.

How will treatment decisions be made?

Patricia Bacon, Chair of Action Hepatitis Canada, shares these patient concerns. “At one time, people living with hepatitis C had no choice. The ‘gold standard’ for treatment was a combination of two drugs that were not easily tolerated by many people, and only about half of those who were treated were cured. Now we have these amazing treatments that will cure almost everyone, yet the cost is outrageous – starting at $55,000 for a twelve-week course”. Bacon says because of the high cost of treatment, not all people can be treated. To do so would bankrupt provincial and territorial health programs. “So how will treatment decisions be made”, Bacon wonders?

Treatment prices must come down

In developing countries, government health programs negotiate huge reductions in the cost of treatments, allowing for more people to be treated. In the developed world, drug manufacturers believe that governments can and will pay much higher costs for drugs. After all, they argue, drug companies invest heavily in bringing a drug to market and are entitled to a reasonable return on their investment.

“We have a cure for a virus that kills hundreds of thousands of people worldwide every year”, states Bacon. “Very few drugs can guarantee they’ll take a life-long and sometimes life-threatening condition and wipe it out. Treatment prices must come down so that more people can be treated”.

About Hepatitis C

Hepatitis C, a virus that damages the liver, can cause debilitating symptoms, liver disease and early death, often going unrecognized, undiagnosed and untreated for years. It is poorly understood, with inadequately funded research, poorly supported prevention initiatives and limited access to treatment, care and support.

Action Hepatitis Canada (www.actionhepatitiscanada.ca), a national coalition of organizations, engages government, policy makers, and civil society to promote hepatitis B and C prevention, improve access to care and treatment, build health-professional capacity, and support community-based groups and initiatives.

AHC Media Release WHD 2014 07 22

WHO Hepatitis Resolution should spur Canada to create national strategy, says Action Hepatitis Canada

Thursday, June 19th, 2014

Toronto, Ontario – June 19, 2014 –Action Hepatitis Canada (AHC) applauds the action taken on May 22 by the 194 member states of the World Health Assembly, including Canada, to unanimously adopt a new resolution on hepatitis.

“Having the World Health Organization (WHO) adopt the resolution gives Canadians, and the millions of people worldwide living with hepatitis, greater hope that these diseases will be given higher priority by governments in Canada, and around the world,” says Patricia Bacon, Chair of AHC.

Hepatitis an epidemic globally and in Canada
Hepatitis is responsible for 1.5 million deaths worldwide every year. Up to 600,000 Canadians are estimated to be living with viral hepatitis, and many don’t know it. WHO urges its member states “to develop multispectral national strategies for preventing, diagnosing, and treating viral hepatitis.”

Call for expanded national strategy
“Canada needs a National Hepatitis Strategy that expands on the current Strategic Framework for Action developed by the Public Health Agency of Canada, “says Bacon.

Hepatitis B and C are viruses that damage the liver, and can cause debilitating symptoms, liver disease and early death, often going unrecognized, undiagnosed and untreated for years. They are poorly understood, with inadequately funded research, poorly supported prevention initiatives and limited access to treatment, care and support.

Bacon adds: “Our coalition has been calling for a national strategy since 2008. We hope that this development by WHO will be a catalyst for stronger action in Canada.”

Action Hepatitis Canada, a national coalition of organizations, engages government, policy makers, and civil society to promote hepatitis B and C prevention, improve access to care and treatment, build health-professional capacity, and support community-based groups and initiatives.

Important Update from Action Hepatitis Canada

Wednesday, May 14th, 2014

The Canadian Coalition of Organizations Responding to Hepatitis B & C has changed its name to Action Hepatitis Canada – better reflecting its role as an advocacy organization that unites organizations and individuals from across Canada to focus increased attention on the response to hepatitis B and C, with the goal 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.

Since 2010, Action Hepatitis Canada has initiated various actions including: developing a Hepatitis Strategy Report Card which was then updated in 2012; producing a Briefing Note – Hepatitis B and Hepatitis C; made its voice heard in light of the Public Health Agency of Canada’s integration process to move toward a new HIV/AIDS and Hepatitis C Community Action Fund; and worked at solidifying the governance structure of Action Hepatitis Canada. At recent meetings of the Steering Committee for Action Hepatitis Canada, a new Membership Terms of Reference and a Steering Committee Terms of Reference were approved.

Current Members

Current members of the Canadian Coalition of Organizations Responding to Hepatitis B & C, now Action Hepatitis Canada, are being asked to review the new Membership Terms of Reference, and if they continue to agree with the goals and intent of Action Hepatitis Canada, reaffirm their support by signing a new Member Form then send it back to us at: actionhepatitiscanada@gmail.com .

Thinking of becoming a member?

If your organization is considering becoming a member of Action Hepatitis Canada, take a few moments to familiarize yourself with the information presented on this website. You can become a member by completing the Member Form and sending it to us at: actionhepatitiscanada@gmail.com .

Thanks for taking the time to learn more about Action Hepatitis Canada!

If you have any further questions or comments, please get in touch with us: actionhepatitiscanada@gmail.com .

Patricia Bacon, Acting Chair, Action Hepatitis Canada

Letter to Federal Health Minister Rona Ambrose

Tuesday, May 6th, 2014

On May 1st, Action Hepatitis Canada sent a letter to the Federal Health Minister, Rona Ambrose, as well as all Opposition Party Leaders, requesting their support for the new resolution on hepatitis to be discussed at the upcoming 67th meeting of the World Health Assembly. Below is the text of that letter:

Dear Minister Ambrose,

We are writing to request your support for the new resolution on viral hepatitis to be discussed at the upcoming 67th meeting of the World Health Assembly.

Viral Hepatitis kills almost 1.5 million people every year, the same number of people as HIV/AIDS. It is the 8th biggest cause of death worldwide, and yet on  a global scale little commitment has been made to tackle it.

We believe that only if all Member States affected by viral hepatitis speak out is there any chance that the necessary resources will be made available, both inside the WHO and, critically, from global donors. Please, therefore, speak out strongly during the World Health Assembly on the need for global priority and action. We would also be most grateful if you would strongly press for the same priority to be given to viral hepatitis as to HIV/AIDS, TB and malaria in the post 2015 Development Agenda. This is in line with your government’s wish to see work on these diseases integrated, an approach which is currently being implemented in Canada.

The upcoming World Health Assembly is a rare opportunity for the world to demonstrate a shared commitment to tackling viral hepatitis. Please make use of it on behalf of all those affected by these diseases in our country.

The resolution on viral hepatitis calls for every country to adopt a national strategy on viral hepatitis.

Canada also needs a true National Hepatitis C Strategy that goes beyond the limitations of its current Strategic Framework for Action document. A National Hepatitis C Strategy would result in improved prevention strategies, higher treatment rates, higher treatment retention, fewer treatment disparities, and new pharmaceutical treatment faster to market. Our coalition has been asking for such a Canadian national strategy since 2008. We now hope that Canada will join the rest of the world in putting in place such a strategy for Canadians.

Action Hepatitis Canada/Action hépatites Canada (www.actionhepatitiscanada.ca) is a national coalition of organizations responding to hepatitis B and C. Our work engages government, policy makers, and civil society across Canada to promote hepatitis B and C prevention, improve access to care and treatment, increase knowledge and innovation, create public health awareness, build health-professional capacity, and support community-based groups and initiatives.

Action Hepatitis Canada may be reached by e-mail at: actionhepatitiscanada@gmail.com and regular mail to my attention.

Respectfully and on behalf of Action Hepatitis Canada,

Patricia Bacon, Acting Chair, Action Hepatitis Canada

cc: Leaders of the Opposition

2014-04-30LtrAmbroseReWHAresolutionFinal

Updated Report Card Concludes: Canada Must Adopt National Hepatitis Strategy to Fight Current Epidemic

Monday, July 16th, 2012

In May 2010, in advance of World Hepatitis Day, we wrote to our Canadian parliamentarians urging them to endorse the idea of adopting by 2012 a fully-funded, coordinated national strategy for both hepatitis b and c. Many Health Ministers wrote back to us outlining some of the measures they have in place in their respective jurisdictions while acknowledging the need for better collaboration and cooperation between the federal, provincial and territorial governments in order to tackle the epidemic effectively and more efficiently.

In July 2011, we wrote again. This time, we presented them with the 2011 Hepatitis Strategy Report Card along with an executive summary. The purpose of the report card (which we update on an on-going basis) was to highlight the successes and record the gaps in provincial, territorial and federal strategies towards a coordinated national approach to address hepatitis B and C. The data gathered reinforced our belief that a fully-funded, coordinated national strategy was more urgent than ever.

Over the last year, members of Action Hepatitis Canada have continued to work with the federal, provincial and territorial governments to reduce new infections, deaths and suffering caused by the hepatitis B and C viruses. While we recognize and applaud the progress that has been made at various levels in many parts of the country, monitoring of government responses to our initial national Six Asks indicates that there remains much to be achieved as we approach the original 2012 deadline.

In looking at the present national situation, three priority areas have been identified for which we ask that concrete measures be implemented before the end of 2012. These priority areas are:

1) Increasing awareness and preventing hepatitis B and hepatitis C infections among at-risk populations.

2) Improving access to health care and drug coverage.

3) Supporting communities and groups through stable funding for prevention, education, care and support.

While new, very effective drugs have been developed such as boceprevir and telaprevir, they are not yet available to all Canadians who desperately need them. In the United States, the Centres for Disease Control and Prevention (CDC) urges people born between 1945 and 1965 to be tested, noting that roughly 75% of people with the disease are baby boomers. Canada has no plans to follow the lead of the U.S. and urge all baby boomers to be tested. The Public Health Agency of Canada is currently reviewing its options, and a report is to be completed by March 2013 that “will help shape our future hep C screening guidelines.” Canada should not drag its feet. Our baby boomers are no less at risk.

Action Hepatitis Canada produced a Briefing Note: Hepatitis B & Hepatitis C which provides a snapshot of the burden of hepatitis B and hepatitis C and the socio-economic costs in Canada. Effective medicines and control strategies are available to dramatically reduce suffering and deaths caused by these diseases and yet federal, provincial and territorial governments have not put forth concerted efforts to fight hepatitis B and C by providing adequate funding and national policy to ensure success.

There are many factors that contribute to the burdens of hepatitis B and C, and those living with and affected by hepatitis B and C not only suffer from the disease but also stigmatization, shame and anguish. The magnitude of impact on human lives and to society can be minimized and / or avoided at lower costs with the correct management strategies initiated today. Healthy outcomes for individuals can be achieved as well as solutions to the key determinants through enhanced cross-sectorial collaborations, increased funding and prioritized spending.

In a July 2012 letter, we are asking our elected government officials to provide leadership in addressing the issues and gaps identified in Action Hepatitis Canada’s Briefing Note and strengthen the delivery of hepatitis C and hepatitis B healthcare to reach the entire population, particularly the most vulnerable and difficult-to-reach. Through collaborations, implementation of solutions in a solid national strategy we have the ability to save lives, improve the quality of lives and limit the impact of hepatitis B and hepatitis C in Canada. Action Hepatitis Canada awaits an update on the status of our government’s strategies to respond to the three priority areas listed above and looks forward to working with F/P/T governments towards this end.

We hope that our elected officials will use the July 28 2012 World Hepatitis Day to make meaningful announcements to this end and that they will add this subject to the agenda of the next Conference of Ministers of Health  which we understand should be taking place in the Fall of 2012.

New Report Card Concludes: Canada Must Adopt National Hepatitis Strategy to Fight Current Epidemic

Thursday, July 28th, 2011

During the last year, Action Hepatitis Canada identified the need to assess the successes and gaps in provincial, territorial and federal strategies as a step towards a fully funded, coordinated national approach to address hepatitis B and C. Action Hepatitis Canada developed a Report Card which looks at each of the 6 national Asks in detail and assesses the strategies implemented by each province and territory as well as the federal government. On the occasion of World Hepatitis Day 2011, we submitted the 2011 Hepatitis Strategy Report Card along with an executive summary to all Premiers and Health Ministers and well as the Prime Minster of Canada and his Health Minister. These documents were also submitted to the media along with a press release which can be viewed here.

For each of the 6 Asks, a number of ‘issues’ were developed, each accompanied by a series of expectations for how Action Hepatitis Canada defines success in addressing the issue. Further, for each expectation, a measurement was identified to indicate whether the expectation is being met. The activities of each province and territory, as well as the federal government, were explored and documented over a period of approximately five months. Input was sought from key stakeholders in each region, including health authorities, government officials, and community organizations. The data gathered reinforces our belief that a coordinated national strategy is more urgent than ever.

We are asking our governments to take a leadership role in creating a national strategy that by 2012 will address the issues and gaps identified in the 2011 Hepatitis Strategy Report Card as contributing to the suffering of so many Canadians. We look forward to working towards this end with our elected representatives.

In acknowledging World Hepatitis Day (WHD), July 28, members of Action Hepatitis Canada reflect the call by the World Hepatitis Alliance and the World Health Organization (WHO) for coordinated efforts in all countries to ensure that viral hepatitis prevention, treatment and support is addressed.

Thank you! Letter Writing Campaign for 2010 Completed

Monday, October 4th, 2010

Thanks to everyone who supported the letter writing campaign for this year’s World Hepatitis Day.

Action Hepatitis Canada is continuing its efforts to bring increased attention to the response to hepatitis B and C in Canada.

Please consider joining our efforts and contributing your ideas, thoughts and actions to the cause.

You can join by filling out the membership form and sending it in to us at actionhepatitiscanada@gmail.com.

Stay tuned for more updates from Action Hepatitis Canada!

URGENT ACTION NEEDED – UPDATED

Wednesday, May 12th, 2010

HELP US TO TAKE ACTION TO REDUCE THE HEALTH AND SOCIAL IMPACT ON THE LIVER HEALTH OF CANADIANS BY SUPPORTING A CALL ON CANADIAN FEDERAL, PROVINCIAL AND TERRITORIAL GOVERNMENTS TO ADOPT AND SANCTION:

HOW:

PHONE, MEET WITH OR SEND A LETTER OR E-MAIL TO YOUR FEDERAL AND PROVINCIAL/TERRITORIAL PARTY LEADERS, THE PRIME MINISTER, YOUR PREMIER, THE MINISTERS OF HEALTH AND YOUR LOCAL MP AND MLA TO LET THEM KNOW THAT YOU SUPPORT THE ADOPTION OF THE SIX CANADIAN ASKS ENDORSING A FULLY-FUNDED, COORDINATED NATIONAL STRATEGY FOR BOTH HEPATITIS B AND C BY 2012 THAT:

  1. Promotes prevention of hepatitis B and C through expanded education, immunization and harm reduction programs all across Canada.
  2. Improves access to comprehensive care and treatment programs in all areas of the country.
  3. Increases knowledge and innovation through interdisciplinary research and surveillance to reduce the burden of hepatitis B and C on Canadians.
  4. Creates awareness about risk factors, stigma and the need for testing among the general population and at-risk groups.
  5. Builds capacity through training and recruitment of qualified health professionals.
  6. Supports communities and community-based groups in developing, delivering and evaluating peer-driven and focused initiatives.

WHY NOW?

More than enough people have died from both hepatitis B and C, diseases that are preventable and treatable. Given that the Sixty-third World Health Assembly recently adopted an important resolution about viral hepatitis, Canada now needs to act by adopting a coordinated comprehensive national strategy to address the epidemic which exists in Canada.

PARTICIPATE IN THIS IMPORTANT CAMPAIGN BY CLICKING ON THE FOLLOWING LINK:

http://ctac.ca/en/action/hep-b-c (link hosted by The Canadian Treatment Action Council)

List of members updated

Thursday, May 6th, 2010

Action Hepatitis Canada is expanding as new members continue to join.

See the full membership list here.

Invitation to Join

Wednesday, April 14th, 2010

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. Action Hepatitis Canada 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:

  1. 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.
  2. 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.
  3. 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: Action Hepatitis Canada c/o   Patricia Bacon, c/o Action Hepatitis Canada Secretariat: 1-800-263-1638, ext. 265  FAX: 1-416-203-8284 E-mail: actionhepatitiscanada@gmail.com For media inquiries, please go to the Coalition Members page and directly contact the group (or groups) which interest you.