Tag Archives: Pacific Hepatitis C Network

The PHCN‘s News in Review Newsletter (06/12/16)

The PHCN‘s News in Review Newsletter (06/12/16)Welcome to the Pacific Hepatitis C Network (PHCN)‘s second Hepatitis C News in Review Newsletter. This is where we review all of the major current issues and events around hepatitis C and hep C treatments. It is an email that includes links to our recent blog posts—including links to blog posts about Public Health Agency of Canada funding.

HEALTH CANADA SUMMARY SAFETY REVIEW – DAAs – ASSESSING THE POTENTIAL RISK OF HEPATITIS B VIRUS REACTIVATION

Please click here for more information.

WHAT WOMEN WITH HEPATITIS C EXPERIENCE NEEDS TO BE IMPROVED NOW

“Although our research on the experience of diagnosis was undertaken prior to the present major advances of interferon-free HCV treatment, which have given new hope of speedy and less burdensome treatment, these new treatments alone will not solve the burden of HCV.” (Mitchell, et al. 2016)

Therefore, it is still critical to examine how women with hepatitis C are cared for and then strive to improve that care. The findings of a new study, published in a recent issue of the Canadian Journal of Nursing Research, are interesting and a good start. Click here to read more.

HEPATITIS C ADVOCACY HIGHLIGHTS

Recently the Public Health Agency of Canada (PHAC) announced that community-based projects that lost funding in the October changes to the HIV and Hepatitis C Community Action Fund‘s Letter of Intent (LOI) funding process will now, on a case-by-case basis, have transitional project funding until March 31, 2018. Click here for more information.

On December 1st, World AIDS Day, the HIV and HCV communities stood together in solidarity with organizations who were denied funding going forward as part of the changes to the PHAC Community Action Fund LOI process. More information about the rally is here.

Daryl Luster was at the World AIDS Day rally and wrote and gave a speech entitled: We Have Not Abandoned the Principles or Communities We Serve, Neither Should PHAC.

In addition, November began with Daryl meeting with BC NDP MLA Shane Simpson. They spoke about the landscape of hepatitis C in BC, local testing shortfalls, and hep C treatments and cures. See a picture here.

HEP C HIGHLIGHTS FROM THE CANADIAN DRUG APPROVAL PIPELINE AND THE LIVER MEETING 2016

The Liver Meeting 2016, the American Association for the Study of Liver Diseases (AASLD)‘s 67th annual meeting, was held last month. Exciting and important hep C clinical results were presented. Some of these highlights can be found in the following posts:

For more information about the topics in this newsletter, please click on the links, visit PHCN’s Hepatitis C Treatment Information Project, or email us.

HCV and HIV Co-Infection – Transmission to Treatment Forum

HCV and HIV Co-Infection - Transmission to Treatment Forum2016 World Hepatitis Day is fast approaching. On July 28th, it will be celebrated and acknowledged around the world with special events. In Vancouver, for example, the Pacific Hepatitis C Network and the Positive Living Society of British Columbia will be hosting a community forum entitled: Hepatitis C and HIV Co-Infection – Transmission to Treatment.

Community Forum: Hepatitis C and HIV Co-Infection – Transmission to Treatment

Hepatitis C and HIV Co-Infection – Transmission to Treatment is the focus of Positive Living BC’s community forum on July 28. This event is free and open to everyone, no RSVP is required. You are invited to drop in to learn about advances in hepatitis C care in Canada, and to meet new people and share your own experiences. Snacks and lunch will be provided. The event will run from 10:30 am to 12 pm.

“The forum will take place at the Carnegie Centre (401 Main St). Dr. Alexandra King, MD, FRCPC, Lu’ma Medical Centre and Suzan Krieger, Access and Assistance Coordinator at Positive Living BC will be presenting. The forum is produced in co-operation with the Pacific Hepatitis C Network.” (Positive Living BC, 2016)

Community Forum’s Details

Date: July 28th

Time: 10:30 am – 12:00 pm

Where: Carnegie Centre, 401 Main Street, Vancouver

For more information, please contact Brandon or phone 604-893-2239.

All are Welcome!

World Hepatitis Day

“Did you know? July 28 is World Hepatitis Day. In 2010, the World Health Organization (WHO) made World Hepatitis Day one of only 4 official disease-specific world health days, to be celebrated each year on the 28th of July. Millions of people across the world now take part in World Hepatitis Day, to raise awareness about viral hepatitis, and to call for access to treatment, better prevention programs and government action. The theme for World Hepatitis Day Canada 2016 is ‘Know Your Status? Get Tested – Learn Your Options’.” (Positive Living BC, 2016)

Please visit World Hepatitis Day Canada or World Hepatitis Day for more information about the global event. Please visit our blog post, 2016 World Hepatitis Day Events Around British Columbia, for information about World Hepatitis Day events taking place around BC.

What do you think about The Vancouver Sun article?

The Vancouver SunAn article, entitled ‘Hepatitis C treatment skyrocket after pill-based drugs covered by B.C. plan’ and published by The Vancouver Sun on July 29, 2015, highlighted not only the cost and marketing around hepatitis C treatments, but also the demand for those treatments in BC.

The article began with: “About 1,400 British Columbians have been treated for hepatitis C in the first four months since new anti-viral medications were covered by the province’s public drug plan — far above predictions. The Ministry of Health expected 1,500 patients in the first full year for the pill-based medication.”

The Pacific Hepatitis C Network is ecstatic to hear that so many British Columbians are seeking treatment. However, do we still need a clear strategic plan in BC to ensure that those who need treatment now get it as soon as possible and those waiting for treatment get excellent care and support? We think so!

What about you? What do you think?

Acknowledged by CADTH

CADTH NewsThe Canadian Agency for Drugs and Technologies in Health (CADTH) acknowledged and thanked the Pacific Hepatitis C Network for being one of 17 patient groups who have contributed five or more patient input submissions to their Common Drug Reviews (CDR).

CADTH Common Drug Reviews, and the patient group input reports that are part of them, are important steps towards getting new treatments more widely available in Canada and BC. They allow patients to have their voices heard in the Canadian drug approval process. They allow patients to explain what it’s like to live with their diseases day-to-day. They allow patients to explain what nobody else can explain.

CADTH’s first Call for Patient Input was issued in May 2010. Three patient groups responded to it. That first review was for Actemra, a treatment for rheumatoid arthritis. It was said that, “The groups provided insight and their unique perspectives into the CADTH Common Drug Review’s (CDR) assessment of Actemra.” Over the years, the insight has continued to be sent in by patient groups and used by CADTH.

Since 2010, CADTH has received 297 patient input submissions from 114 groups for Common Drug Reviews. This patient input has contributed to 142 final recommendations for treatments to be reimbursed, or not, by our publicly funded drug plans.

Thank you to all of you who have contributed to patient input reports submitted by the Pacific Hepatitis C Network. We couldn’t have written the reports without you!

The Canadian Agency for Drugs and Technologies in Health (CADTH)

The Canadian Agency for Drugs and Technologies in Health (CADTH) is an independent, not-for-profit organization responsible for providing health care decision-makers with objective evidence and recommendations to help make informed decisions about the use of health technologies, such as drugs, tests, and surgical devices and procedures.

CADTH has brief but interesting videos about itself and patient input submissions posted on YouTube.

CADTH's list of the 17 patient groups that have contributed five or more patient group input submissions
The above is a snapshot of CADTH’s list of the 17 patient groups that have contributed five or more patient group input submissions to Common Drug Reviews over the past five years. The complete article, Five Years of Patient Engagement, can be found online.

BC’s PharmaCare lists Harvoni and Sovaldi!

Galexos Sovaldi pictureWhat follows is PHCN‘s press release regarding the BC Ministry of Health offering Harvoni and Sovaldi, but we want to also say WOW!!!  To everyone who has been waiting so long and so patiently for this day – CONGRATULATIONS!!!!

Stay tuned for continuing updates on other new drugs in the pipeline.

Here is PHCN’s press release:

Pacific Hepatitis C Network Welcomes Decision to Provide Access to New Therapies

 

B.C. Ministry of Health to offer two new hepatitis C virus drugs to eligible patients

Vancouver, B.C. – (March 23th, 2015) – Pacific Hepatitis C Network (PHCN) today welcomed the B.C. Ministry of Health’s announcement that it will provide access to two new hepatitis C virus (HCV) therapies, Harvoni and Sovaldi. HCV is considered one of the most serious public health issues facing Canadians, causing more years of life lost than any other infectious disease in the country.

“We are thrilled that these new therapies are now available to eligible patients,” says Daryl Luster, President of PHCN. “As a network and voice for those living with hepatitis C in British Columbia, these new treatments are a huge leap forward and will greatly change the outcome for those living with, and affected by, hep C.”

Harvoni and Sovaldi are two new therapies that, along with multiple other provinces in Canada, will be available to eligible patients in B.C. as of March 24th. Harvoni is a substantial step forward in HCV treatment because it is a highly curative, low-side effect therapy that is simple to take and is both ribavirin and interferon-free.

“In contrast with therapies used until now, this breakthrough hep C treatment has a cure rate of close to 100 per cent, with few or no side effects, as well as a shortened treatment cycle and is ribavirin-free,” says Daryl Luster. “The B.C. Government should be congratulated for taking this significant step forward that will help to eliminate hepatitis C in a generation.”

Often heralded as a “silent epidemic” because of its few or asymptomatic characteristics, HCV seriously affects the liver and can be difficult to treat. In fact, many Canadians living with HCV are unaware of their infection, primarily within the baby boomer demographic, which highlights the importance of implementing hep C screening processes across the nation.

Equally important as the availability of these new treatments and intensive hep C screening processes are monitoring, counseling and engaging with care to help prevent high numbers of HCV patients requiring intensive health care for advanced liver disease.

About the Pacific Hepatitis C Network

The Pacific Hepatitis C Network (PHCN) is a non-profit community-based organization that was founded in March 2007. PCHN is a voice for those living with hep C and works as an advocacy group to bring together people living with, affected by and at-risk for the hep C infection, including people living with hepatitis C, health care providers, community-based service providers and community and government stakeholders. PCHN works alongside individuals, groups and organizations in efforts to strengthen our collective response to hepatitis C in BC. For more information please visit: http://ww.pacifichepc.org/, the Pacific Hepatitis C Network, or http://www.hepctip.ca/, PHCN’s Hepatitis C Treatment Information Project.

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For more information or interview requests, please contact:

Deb Schmitz

Pacific Hepatitis C Network

deb@pacifichepc.org

604 740 1092

Here is the link to the Minister’s announcement:  http://www.newsroom.gov.bc.ca/2015/03/bc-covers-two-curative-hepatitis-c-drugs.html

PAN/CATIE – Frontline Support Workers’ Conference

PHCN logo boxBetween February 24th and February 26th, PHCN had the privilege of participating in the PAN/CATIE – Frontline Support Workers’ Conference held in Richmond, BC. The three day workforce development training was well organized and included a variety of interesting sessions and workshops—including one led by PHCN.

The first day of the conference was led by Yvette Perreault from the AIDS Bereavement and Resiliency Program of Ontario. It examined grief, loss, and how to build resiliency. One of Yvette’s many noteworthy points was that grief doesn’t have a clear beginning or end, but may come in waves for sometime after the experience. Thus, it’s important to take some time away or seek support not only immediately after a trauma but also after some time has passed. Or to put it another way, if someone experiences trauma, it is just as important to be supportive months after the trauma as it is just after it.

Conference sessions held on the other two days explored HIV and hepatitis C co-infection and new and emerging treatments for hep C. For example, CATIE led a workshop about dual diagnosis, dual stigma, and maintaining good health while living with co-infection. Dr. Alnoor Ramji, Clinical Associate Professor of Medicine, Gastroenterology and Hepatology, Division of Gastroenterology, University of British Columbia, and PHCN then led sessions on the new and emerging hep C treatments. PHCN’s session also discussed the challenges and barriers to hep C treatment access and solutions that provide the best options for people living with hep C.

Other workshops covered harm reduction, emotional wellness, aging with HIV, HIV disclosure and criminalization, and recreational therapy and animal assisted intervention.

Thank you to all those who worked to make the conference such a successful event.

Project Update

sq_experiencesThe Hepatitis C Treatment Information Project’s drug pipeline diagram has been updated twice in the past couple of weeks, the Hep C Drug Pipeline page has exploded with the help of easy to read tables, and our Financial Support page now lists a brand-new assistance program, AbbVie Care, for patients and health care professionals.

Pay the Hepatitis C Treatment Information Project a visit for more information about currently approved hep C treatments in BC–there have been recent changes. The project also has information on emerging treatments, the drug approval process in Canada and BC, and financial support programs.

You can also email us your questions about hep C treatments.

PHCN’s Hepatitis C Treatment Information Project is a source of information that doesn’t post a ‘site last modified date’ because it is truly forever changing!

Response to Treatment by Prevention Article

sq_trialsThe Globe and Mail article: B.C. medical researchers offer treatment by prevention for hepatitis C

PHCN recognizes treatment as prevention (TasP) as the strategy of choice for people who use injection/inhalation drugs, who, as a group, have the highest rate of new HCV infections. Treatment as prevention is an approach tailored to meet their specific health needs and we both support and advocate for that approach in all communities of the province.

That idea – specific approaches designed to meet the needs of specific populations – is what is critical in the drive to cure individuals and eradicate hepatitis C in BC.

The gap right now is a clearly thought-out and articulated strategy for reaching out to baby boomers, immigrant populations, and Aboriginal people, and engaging them in care, treatment, and support for hepatitis C. The other half of this picture is the health care system and providers within it. What is the strategy to build capacity – system and providers – to meet this urgent and acute population health demand?