World Hepatitis Day - HCV, COVID-19, and the Art of the Possible
July 28, 2020
During these uncertain times, 2030 seems a long way away. But our federal government has made a promise to the world, via a signed and dated World Health Organization (WHO) declaration, that Canada will eliminate viral hepatitis as a public health threat by the end of this decade. Eliminating hepatitis C (HCV) is attainable, and much less amorphous than conquering COVID-19, our current foe. Unlike COVID-19, we have a cure for HCV. We also have practical, evidence-based public health guidance for policymakers in the form of the Blueprint to inform the elimination of hepatitis C in Canada. The solutions are at the ready.
HCV is a chronic infectious disease characterized by liver inflammation and damage and, if left untreated, it can lead to death. Certain communities within the Canadian population are disproportionately affected, including Indigenous peoples, people who use drugs, and anyone born between the years of 1945-1975. HCV is preventable, and avoiding its associated health issues is a matter of testing and treatment; this needn’t be a drain on public resources, nor should people continue to needlessly suffer.
So what’s missing in this 2030 equation? The answer is simple: a sense of urgency.
Since signing onto the international WHO target in May 2016, our government seems content to kick this particular problem down the road. Unfortunately, COVID-19 hasn’t made the situation any better: HCV testing was on hold for months in many provinces as the labs that usually process HCV tests were overwhelmed with COVID-19. New HCV treatment starts have also dropped off significantly as diagnostic testing was unavailable and healthcare personnel were redeployed to COVID-19. Harm reduction services for people who use drugs were closed or faced significantly reduced hours, and policymakers have certainly been preoccupied with pandemic-related issues. Following 2017-2018 treatment numbers that had HCV experts feeling cautiously optimistic, prescribing rates had already begun to drop in 2019. Now, with treatment rates plummeting in 2020, critical steps will need to be taken to get Canada back on track.
But while COVID-19 is understandably taking up a lot of air time at the moment, the pandemic has shown us what preparedness (or a lack thereof) can produce. It’s also shown us what is eminently possible when all levels of government, industry, and community work together, centering science, human rights, and lived experience. Policy solutions can and should be effectively deployed with the necessary urgency to face a public health crisis head on.
So on World Hepatitis Day, with just ten years remaining until Canada is meant to meet its goal of eliminating viral hepatitis as a public health threat, we must ask ourselves an important question: What urgent energy and efforts are needed to eliminate HCV here in Canada?
For starters, we need to bring much-needed testing solutions to this equation. Currently one of the main barriers to eliminating HCV is a low diagnostic rate — it is estimated that almost half of the approximately 250,000 Canadians living with hepatitis C don’t even know they are infected.
In other countries, “point-of-care” tests are available that do not rely on central labs and make it easier to test and diagnose people outside of traditional healthcare settings. But here, Health Canada can’t approve these tests because industry won’t begin the onerous application process without guarantees that the provinces will buy them, and provinces won’t pre-order until the tests are Health Canada-approved. Imagine the outrage that would have erupted if the same circular games had been played with COVID-19 tests this spring. A sense of urgency seems to make these types of barriers disappear.
Perhaps if our federal and provincial governments acted on the urgency of eliminating hepatitis C, we might also see some testing and treatment targets developed. Short-term goals could keep health authorities motivated and provide some accountability along the way. With COVID-19, we’ve seen the shift from sparingly testing to openly testing once audacious targets are publicly announced. These targets send the message that although tests are expensive, not testing will certainly cost us more.
Through our collective COVID-19 response, we are increasing health infrastructure, including scaling up telehealth and labs, working together in new ways, and developing a new appreciation for the value of offering testing to everyone and setting targets; these can also be building blocks to eliminating HCV.
COVID-19 has shown us what is possible in the face of urgent needs. By bringing this same energy to HCV prevention, testing, and treatment, we can achieve our 2030 elimination goal. We just need the political will to do it.
AHC launches Priority Action for Eliminating Hepatitis C in Ontario
July 8, 2020
Last November, AHC hosted an Ontario HCV Elimination meeting. The goal was to hear from our members and those representing the priority populations identified in the Elimination Blueprint about which specific policies were making it more difficult to prevent, diagnose and treat HCV in Ontario.
The results of that meeting underlie a summary brief highlighting our top five policy recommendations that will have the biggest impact in Ontario:
AHC participates in STBBI Testing Forum in Ottawa
February 10, 2020
The STBBI Testing Forum: Reaching the Undiagnosed was held on February 4-5 in Ottawa. It was hosted by the CIHR Centre for Reach 3.0/MAP Centre for Urban Health Solutions, the National Collaborating Centre for Infectious Diseases, and PHAC.
AHC was represented by Jennifer van Gennip, and it was a pleasure to see several members there, and meet face-to-face. There were about 100 participants from across the country, with several excellent speakers and lots of time for breakout conversations.
The organizers will be sharing a report in a couple of months, but in the meantime, items of note include:
AHC hosts Ontario members for HCV Elimination Meeting
December 12, 2019
On November 25-26, 2019, AHC hosted an Ontario HCV Elimination Meeting.
This was the first face-to-face meeting of AHC members since the launch of the CanHepC Blueprint to inform hepatitis C elimination efforts in Canada in May 2019.
With much of the work of advocating for HCV elimination moving to the provincial/territorial level of government, the AHC Steering Committee and CanHepC agreed on the need to have provincial-level community dialogue about what the recommendations mean in each province, given the diversity of contexts across the country.
Based on the large proportion of Canada’s burden of HCV that lies in Ontario and the number of member organizations that AHC has in Ontario, it was agreed that Ontario would be the province in which to try out this type of gathering. The learnings from this meeting would then inform our engagement efforts in other provinces.
Our objective was to gather insights from our regional members on what specific policy barriers organizations are facing as part of the provincial hepatitis C response, and which handful of recommendations for the Elimination Blueprint members felt would have the biggest impact from a community perspective.
This information would feed into the creation of a summary brief for provincial health policy makers, which could then be used by the AHC coalition members in Ontario as an advocacy tool.
You can read the summary report of the meeting here.
Federal Election 2019: Open Letter to Party Leaders
September 26, 2019
In 2016, Canada committed on the world stage to eliminate viral hepatitis by 2030, but a recent study indicates we are desperately lagging in terms of progress. If things continue as they are, we will not reach our goal until 2050 or later.
CanHepC released a Blueprint to Inform HCV Elimination Efforts in Canada this year, giving us the policy recommendations that could get us on track, yet the new Government of Canada Five-Year Action Plan on Sexually Transmitted and Blood-Borne Infections includes zero targets, no concrete actions, and no real accountability.
As Canadians prepare to head to the polls, we have sent an open letter to all federal party leaders to ask them:
If elected, will your government uphold Canada’s WHO commitment to eliminate viral hepatitis by 2030? How will you strengthen the STBBI Action Plan to accomplish this, and what accountabilities will you put in place?
You can view the letter here.
We will share all response received by October 14th with our membership ahead of Election Day, and we look forward to working with the new government to reach our target of eliminating viral hepatitis as a public health threat by 2030.
HBV Cure Workshop coming to Toronto this fall
September 20, 2019
With a vaccine and treatment available, and a cure on the horizon, Hepatitis B is part of Canada's global commitment to eliminating viral hepatitis as a public health threat by 2030.
On November 6, 2019, AHC will join fellow advocates in Toronto to attend the one-day 6th International HBV Cure Workshop.
From the Chairs: "The International HBV Cure Workshop provides a unique setting for international interchange in order to define the pathway forward for achieving a cure for Hepatitis B. ... Delegates will have access to the latest developments relating to a cure, a thorough understanding of new research and ongoing clinical trials, and the well-received and highly popular roundtable discussions with the world's leading experts."
Click here for more information and registration. Click here for the event flyer.
Federal Government launches STBBI Action Plan
July 22, 2019
In this sense, we are pleased to be moving one step closer to actions and investments that will work toward the elimination of viral hepatitis as a public health threat by 2030.
But after more than five years of advocating for a viral hepatitis elimination plan, the arrival of this Action Plan is somewhat anti-climactic.
First, the good.
The Action Plan:
The Minister also announced funding for several initiatives that support the priorities of the Action Plan:
Now, the bad.
The Action Plan:
In short, we have been calling for an implementation plan with four must-haves:
This Action Plan does not provide any of these things; instead, it simply acknowledges that these things are needed.
We will continue to call for federal, provincial, and territorial implementation plans that move from the conceptual to actual actions, targets, and timelines, and that are oriented toward the extraordinary opportunity to eliminate the most burdensome infectious disease in the country.
Hepatitis C Blueprint Launch Invitation
April 15, 2019
Please join CanHepC and AHC for the official launch of the Blueprint to Inform a Hepatitis C Elimination Efforts in Canada presented by Dr. Jordan Feld.
Friday May 24, 2019
Hotel Bonaventure, Montreal Quebec
CanHepC is leading a joint effort uniting expertise in the development of a Blueprint to Inform a Hepatitis C Elimination Strategy in Canada that reflects cross-sector priorities, recommendations and perspectives to inform hepatitis C elimination efforts in Canada.
Registration for the Blueprint Launch is complimentary to all those wishing to attend in person. For those unable to attend in person, the launch will also be live streamed (more details to come soon). For more information on the Blueprint, please visit the CanHepC website.
UN Resolution “Promoting measures to prevent and treat viral hepatitis C among people who use drugs” passed with Canada as Co-Sponsor
March 22, 2019
This week we received an email from the World Hepatitis Alliance in March just as the UN Commission on Narcotic Drugs (CND) gathered to meet in Vienna.
There was a draft resolution that needed support, as it would promote evidence-based and human rights-based interventions for the international drug policy agenda, with a specific focus on communities that are vulnerable to viral hepatitis.
According to the World Hepatitis Alliance (WHA), "The adoption of this Resolution is crucial to reinforce the fight against hepatitis on the drug policy agenda, and achieve the viral hepatitis elimination goal set up in the Global health sector strategy on viral hepatitis adopted by the World Health Assembly in 2016."
Luckily, Richard Elliot of Canadian HIV/AIDS Legal Network was in Vienna for this event and was able to provide context and also contact information for our Canadian delegates, who were engaging already in support of the resolution.
We were able to write quickly to encourage their continued support, and by the end of the week, the Resolution had passed with Canada as a co-sponsor.
As noted by the Treatment Access Group (TAG), "the resolution encourages national governments to consider a range of harm reduction strategies and interventions, utilizing a right-based approach. The resolution further affirms the need to strengthen health systems, address structural and social barriers to access in screening, treatment, and other lifesaving services."
This Resolution provides leverage in our asks for support of our harm reduction efforts, both internationally and here in Canada. As a co-sponsor of the resolution, we can hold our own governments accountable to address our rising opioid and infectious disease crisis with non-stigmatizing, human rights affirming interventions and access to treatment for communities that are vulnerable to viral hepatitis.
A couple quick facts about viral hepatitis and drug use:
In related news, Canada is making an $8.5-million investment in 28 harm reduction programs around the country. This month, an announcement was made that AHC member organization Avenue B in Saint John, NB (formerly AIDS Saint John) was receiving funding for their harm reduction program including the Peer Navigation team they are building. In total, 12 of the 28 funded projects are with AHC members.
Treatment Access Update: AbbVie reaches agreement with pCPA for Maviret
March 1, 2019
AbbVie announced late last week that an agreement was reached with the pan-Canadian Pharmaceutical Alliance (pCPA) regarding MAVIRET™ (glecaprevir/pibrentasvir tablets). According to the announcement, MAVIRET is the only 8-week, pan-genotypic treatment for patients without cirrhosis and who are new to treatment, who make up a large portion of HCV patients in Canada.
Following the positive conclusion with the pCPA, Ontario will be the first province to reimburse MAVIRET on its public formulary as of February 28, 2019. As listed on the Ontario Drug Benefit (ODB)3 Formulary as a Limited Use product, MAVIRET will be covered for treatment-naïve and treatment-experienced adult patients with chronic hepatitis C infection (regardless of fibrosis stage).
AHC Impact Report 2018 Released
January 21, 2019
As part of our Strategic Planning that took place at the end of 2018, we are excited to share our 1st Impact Report.
This report captures the highlights of our work in 2018, and review our significant policy wins over the last four years, as well as a peak at where we are going next. Click below to download!
AHC Steering Committee surveys members, holds Strategic Planning Session in Toronto: Revitalized mission and focused plan for 2019
November 30, 2018
Since reorganizing in 2014, AHC has grown significantly and the hepatitis C environment has changed dramatically. In 2015 we hired a researcher/policy writer and developed 4 key asks in the form of position papers, on areas we deemed priorities for removing barriers to treatment and care for those living with hepatitis C in Canada:
Three asks at the federal level:
These 4 asks determined our work plans for the last three years, keeping our advocacy focused on these priorities. While these asks may not have always seemed connected with your daily 1:1 work with your clients, our goal has been to impact the system in a way that would ultimately make Hep C treatment and care more accessible for those affected.
Through the persistent work of the AHC and our many allies, many of these asks have been accomplished:
With so many fantastic wins in hepatitis C advocacy in the last 2 years especially, this is an important time to re-evaluate our priorities and our strategic asks.
The AHC Steering Committee undertook an Impact Assessment/Strategic Planning process this fall. One of our greatest strengths is our membership, so the first step was to survey/interview members to learn what value AHC brings to their work, how they like to be engaged, and where their Hep C advocacy priorities lie.
We heard back that our members like to receive the member updates and participate in campaigns like petitions and postcard mailings, and we learned that many of our members like us advocating to the government on behalf of their organizations and clients. We also heard that testing remains a very big gap - access to testing is still a big barrier to finding those infected and offering them treatment.
The Steering Committee met in Toronto November 15-16 to determine whether there was still work for AHC to do as a national organization, and if so, how to best go about it. With the help of a very good facilitator, it was determined that yes, one of the things missing currently is accountability to Canada's international commitment to eliminate viral hepatitis as a public health threat in Canada by 2030. AHC can bring that community accountability through continued pressure on governments for implementation plans that include scaled up testing, treatment, and prevention strategies, and a 2020 report card on progress to date toward the targets set out by the WHO.
It was also determined that some slight shifts in governance will be needed as well, to tap into the strengths of our Steering Committee members more effectively. An interim Executive Committee was established to help guide the AHC through this process until our AGM and Steering Committee elections in early 2019.
There is a renewed energy around our updated mission and plans as a natural next step for AHC, and excitement for 2019 and beyond!
AHC participates in first NOhep Village at Global Hepatitis Summit in Toronto
June 17, 2018
Action Hepatitis Canada was pleased to be a participant in the inaugural NOhep Village at the Global Hepatitis Summit in Toronto, June 13-16, 2018.
Here are a few photos from the weekend. We want to recognize our members who participated and presented as well: Canadian Aboriginal AIDS Network (CAAN), CATIE, Canadian Treatment Action Council (CTAC), and Prisoner’s HIV/AIDS Support Action Network (PASAN).
PEI Becomes 1st Province in Canada to Commit to a Strategy to Eliminate Hepatitis
June 14, 2018
The PEI government has announced its commitment to expand their hepatitis C treatment program to an elimination program with enhanced access to curative medication, prevention, and follow-up care.
Prince Edward Island expects to effectively eliminate the presence of the virus within the province by 2025 (ahead of the World Health Organization’s target of 2030).
"Prince Edward Island continues to be a provincial leader in Canada, ensuring that its residents are diagnosed and linked to hepatitis C care and treatment," says Action Hepatitis Canada’s co-chair Gerard Yetman. "To see a province committing to elimination, and dedicating resources to developing a coordinated plan, is something we would like to see other provinces follow in the near future."
Read more here.
Finally! New Hepatitis C Testing Guideline Released.
June 6, 2018
On Monday, the Canadian Association for the Study of the Liver (CASL) released updated Canadian Guidelines for hepatitis C, which include a recommendation for testing for those born between 1945-1975, in addition to the current risk-based screening recommendation.
Here is the CBC article about it.
Here are the actual guidelines in the Canadian Medical Association Journal (CMAJ).
AHC and our many allies have been calling for age cohort-based testing since at least 2014, so this is great news. You can read a bit about our history on this policy issue here.
Treatment Access Update: Alberta, Saskatchewan, Manitoba, Yukon, and NIHB formularies all lift eligibility restrictions for hepatitis C treatment.
April 24, 2018
We are pleased to share that in addition to Ontario, Quebec, and British Columbia, which all announced updates to their formularies earlier this year (and PEI, who has had open access to hepatitis C treatment for a few years), all three prairie provinces plus Yukon Territory, and the federal NIHB formularies have all been updated this month as well, eliminating fibrosis restrictions on hepatitis C treatment.
This means that well over 90% of the population of Canada now has access to hepatitis C treatment, which is a huge win for hepatitis C advocates who have been working hard toward improved treatment access since 2014.
In many provinces, this update is not being widely publicized, so it is up to us to spread the word to clients and advocates throughout the community.
Treatment Access Update: Ontario lifts eligibility restrictions for hepatitis C treatment.
February 21, 2018
Action Hepatitis Canada is pleased to share some great news: Ontario has announced today that effective February 28, 2018, the fibrosis requirement for hepatitis C treatment will be removed!
Finally, diagnosis of chronic hepatitis C and genotyping is all that will be required in Ontario to access treatment, for those who haven't been treated previously.
This announcement comes almost one year since the pCPA negotiations which lowered hepatitis C treatment prices to the provinces and territories. At that time Ontario promised to open up treatment access within 12 months, and today's announcement makes them the first province to do so (other than PEI - they have their own Hep C Elimination Plan which includes open access to treatment).
This announcement is being sent to prescribers and pharmacies only, so it is up to us to help spread the word to our community members.
Full details on the updated formulary can be found here.
Meetings in Ottawa
December 20, 2017
The AHC has been busy in Ottawa over the last month, with several meetings:
On November 22nd, our Chair Patricia Bacon and Government Relations Consultant Christopher Holcroft attended five meetings on the Hill. In sum the meetings were encouraging and there are several follow-ups:
On December 6th, Steering Committee member Laurence Mersilian and Christopher Holcroft attended two more meetings:
If you would like AHC support in writing to or meeting with your MP on issues to do with hepatitis C, let us know!
Patricia Bacon presents on World Hepatitis Summit learnings at CATIE Forum
November 23, 2017
AHC Chair Patricia Bacon has represented us well today at the CATIE Forum in Toronto. Patricia shared learnings from the World Hepatitis Summit in Brazil earlier this month, that Canada can learn from to meet our 2030 WHO targets. We need to scale up diagnosis, treatment, and prevention.
What We Can Learn from Other Countries?
Countries who are on track to meet their 2030 targets are doing these 3 things:
AHC in Brazil!
November 20, 2017
Action Hepatitis Canada is a proud member of the World Hepatitis Alliance, and we were pleased to attend the World Hepatitis Summit 2017 and hear the latest on what other countries are doing to reach their 2030 elimintion targets.
Sadly, it seems Canada is lagging behind. You can read Melisa Dickie's 4 top takeaways from the summit for Canada here on the CATIE blog.
AHC Prairie Regional Advocacy Meeting
October 25, 2017
Our Prairies Regional Hep C Advocacy Meeting in Saskatoon earlier this month was a great success! Twelve representatives from local clinics and organizations working in Hep C joined the members of the Steering Committee for 1.5 days of meetings.
Our Chair, Patricia Bacon, skillfully led the group through identifying key issues standing in the way of Canada meeting our goal of eliminating hepatitis C by 2030. We then developed solutions and came up with plans to implement, including immediate action items.
Some very concrete and promising ideas came out of our time together, and it will be exciting to work on these plans with our partners in the Prairies! The full summary notes can be downloaded here.
Our Steering Committee also held 1.5 days of face-to-face meetings in Saskatoon, where we were able to review our priorities and build out our 2018 Work Plan.
World Hepatitis Day 2017
July 28, 2017
On Friday, July 28th, Action Hepatitis Canada will join hundreds of organizations around the world in marking World Hepatitis Day.
By taking part in World Hepatitis Day, you can help amplify our call for federal leadership in the elimination of viral hepatitis in Canada.
There are a number of ways that you can support this campaign. Go to our toolkit for ideas.
MP Hep C Learning Event in Ottawa
May 18, 2017
Action Hepatitis Canada was pleased to host a Hep C Learning Event for MPs, sponsored by MP Michael McLeod, in the Parliamentary Restaurant. Most of the AHC Exec was in attendance, along with member organization representatives Karine L from Dopamine in Montreal, Janet R and Ecaterina D from CSIH, and Rob Boyd from Sandy Hill CHC Oasis Program.
MP McLeod shared some of his story of how he came to be a champion for Hep C awareness and testing, after going through the diagnosis and treatment process with a close family member. He noted that although his relative was cured, many of his friends were diagnosed too late, and that the federal government has an obligation to take leadership in raising awareness of the need for testing and eliminating this curable disease, particularly testing of the age cohort born between 1945-1975.
Dr. Curtis Cooper from the Ottawa Hospital and a CanHepC member, shared from his clinical perspective, and that while MP McLeod's story is an unfortunate one, it is not unique, that every day in clinics across the country, individuals are finding out that they are either not sick enough to qualify for treatment, or being diagnosed too late for treatment to be effective.
We also heard from Mike Bigelow, an individual who lives in Ottawa and bravely shared about his own experience of being diagnosed with hepatitis C and his struggle in the healthcare system to prove he was "worthy" of curing.
Patricia Bacon, chair of AHC, wrapped up, reminding the MPs that the Canadian government has made an international commitment to eliminate hepatitis C as a public health threat by 2030, and that part of that commitment included making a National Action Plan, yet Canada still does not have one and without a coordinated, resourced plan, this target will not be met.
All 4 speakers were very impactful and shared similar messages from their own perspectives:
Hepatitis C is preventable, it is curable, and we have made an international commitment to eliminate it as a public health threat by 2030. Despite great progress on the science side, policy-wise there are still barriers in getting the cure to those who need it. Federal leadership is needed to meet these international commitments and save thousands of Canadian lives.
As well as speakers, we had allowed time for MPs to receive advice on concerns that constituents are bringing to them about hepatitis C. We were able to have very good conversations with several MPs, including MP Sheri Benson from Saskatoon. MP Benson is very concerned about the hepatitis C rates in her province, and wants to be involved in our regional meeting when the AHC comes to Saskatoon this October. MP Saini of Kitchener was a pharmacist before going in to politics, and so he understood the benefits of early diagnosis and the important opportunity presented by these new drugs with their high efficacy and low side effects. MP Ken McDonald from St. John's, NL was very interested and engaged, and MP Marjolaine Boutin-Sweet of Montreal is very supportive of hepatitis C testing as well. MP Kamal Khera from Brampton West was there briefly and asked us to follow up with her to see how her office could lend support.
Thank you to the MPs who attended, who were open to learning, and to our speakers and members who attended and shared their stories.
Many thanks as well to the AHC members who reached out to their own MPs to follow up on our invitation. Requests from constituents carry so much more weight, and our power is in our network. Leveraging our local connections across the country is what will help our important message cut through the numerous requests government officials receive every day.
March 9, 2017
Action Hepatitis Canada was very active in Banff last week, making the most of the gathering of Canada's top hepatitis C experts for the 6th Canadian Symposium on HCV.
On Thursday, March 2, the AHC Steering Committee met for the first face-to-face meeting of the year, tackling big questions of priorities, remaining barriers, and where to best place our efforts for maximum impact on the issues of testing and diagnosis, pricing and access, monitoring and care, political engagement/messaging, upcoming opportunities, and our 2017 regional capacity building meeting in the prairies.
On Friday morning ahead of the Symposium, we hosted a number of physicians and nurses in a very productive breakfast meeting. We were able to share a little about who the AHC is and what we do, and receive valuable feedback from these treaters about what policy barriers interfere with their work, how the AHC can help them, and ways that they would be interested in collaborating with the AHC. The information gleened from this short time together was invaluable and we are very grateful to the treaters who made time to meet with us.
The Symposium provided lots of interesting perspectives in the research and policies around hepatitis C treatment and care and the goal of elimination. It also provided an opportunity for the AHC to meet new potential members, share some of our positions, and further our relationship with CanHepC. Our chair Patricia Bacon represented the AHC very well on a panel discussing the need for a national strategy, and we were able to distribute postcards and display a poster, in addition to our info booth.
All in all, a very full and productive 2 days of advocacy in Banff.
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