All posts by Deb Schmitz

National screening guidelines for hep C abandon baby boomers.

Once again, the largest group of people at risk for living with hepatitis C in Canada  – baby boomers – are excluded from the Canadian Task Force on Preventive Health (CTFPH)’s hepatitis C screening guideline recommendations.

As a community-based, lived experience organization, we urge testing of all at-risk groups, including those born between 1945 – 1965 in BC. Two-thirds – some 55,000 people call in that group in here in BC.

We also urge the new British Columbia Minister of Health, when that person is appointed, to consider the extensive data in British Columbia that supports identifying all those in the age cohort of 1945 – 1965 and linking them with care and treatment for better health and budget outcomes.

“If not” says Pacific Hepatitis C Network (PHCN) President Daryl Luster, “and provinces and territories endorse these new guidelines as practice, physicians and public health practitioners will end up doing great harm.”

To abide by the CTFPH’s poorly reasoned guidelines means some people in British Columbia will remain undiagnosed and are or will become sick with liver disease. They may get too sick for treatment. They’re at-risk for premature death and for other chronic diseases like diabetes and heart disease.

PHCN’s Daryl Luster has first-hand experience. “As a person who is part of the baby boomer age group who was diagnosed only by accident, with symptoms for years, the assertion that asymptomatic people will only be harmed by a positive diagnosis is crazy-making.”

And stunningly wrong. It is widely known in the research that people living with HCV can have NO symptoms until they have such advanced disease  that they may not be able to take treatment, may end up with liver cancer and may suffer premature death. We also now know that treating before liver disease sets in yields better health outcomes overall. However, even if treatment isn’t an option, how ethical is it to keep critical information about a person’s health from them? That isn’t a decision for those in the health care system to make alone.

“I am one of the lucky ones” Daryl points out. “I was able to get into a clinical trial – 1 year long – and I was cured. But I still have health issues in part because it took so long to get a diagnosis.”

Another key CTFPH argument against screening the 1945 – 1975 (nationally) age cohort in Canada is that,

“…there are some people in Canada who don’t know they have the virus and if we did screen them and treat them, the cost of treatment would be very high, based on the super-high drug costs.” 

“The comments about price of treating people,” says Daryl Luster, “are once again an insult to me and all of us who are aware that prices in Canada are now substantially lower due to recent negotiations. The cost of ignoring a significant number of people living with hepatitis C will be substantial over time, putting a greater burden on health budgets across Canada, not less. “

In fact, finding and treating people living with hepatitis C saves lives and money. These cost savings were true even before the recently announced new drug pricing for hepatitis C treatments. Now, significantly lower drug pricing, which the CTFPH failed to take into consideration, leaves their argument at best based on inaccurate, out-dated information.

The fight isn’t over yet. This exclusion is not acceptable in the community of those living with and working hard to reach and cure all those living with hepatitis C. We are nearly unanimously united in our outcry against this recommendation and for the inclusion of age-based screening in the national hep C screening recommendations.

In the meantime, if you were born between 1945 and 1975, get tested for hep C. If you test positive, find out if you still have the virus. That’s a second test.  And stay in touch with us.

For more responses to the screening recommendations released this week:

Canadian Liver Foundation

Dr Eric Yoshida

For more in-depth reading about the CTFPHC’s guidelines:

Hepatitis C (2017)

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Candidate Questionnaire – 2017 Provincial Election

All candidates running for office in this 2017 provincial election have been sent this questionnaire and background information.  Results from candidates and parties will be posted in blogs leading up to the election.  

Our question:  Do you support PHCN’s 5 Point Plan to help eliminate hepatitis C from BC by 2030?

Feel free to check in with your candidates in your riding about our question.  Find your candidates here:  http://elections.bc.ca/2017-general-election/candidates/

Feel free to email us at BCElection2017@pacifichepc.org 🙂

Pacific Hep C Network

BC Election 2017 Candidate Questionnaire

New hepatitis C medications are true game-changers. Most treatment courses now take less than three months with minimal side effects and cure rates close to 100 per cent. BC and other provincial governments recently announced a deal with drug manufacturers to get even better value for taxpayers. With the right plan we can eliminate hepatitis C from BC within a generation.

The hepatitis C virus can cause damage for decades with few or no symptoms and can lead to liver cancer and irreversible liver failure. It is one of the five major causes of infectious-illness death globally along with HIV, hepatitis B malaria, and TB.

The group most impacted — some 60,000 people in BC — are those born between 1945 to 1964 (the older adult age cohort). Many have lived with the infection for years but have not gone for testing because neither they –nor their doctors – believe they are at risk.

While a hepatitis C-free future is possible a significant challenge remains: identifying those living with the virus that have not been diagnosed, assessed or treated for their hep C infection. British Columbia needs to refresh its hepatitis C strategy, reinforce health system readiness and expand awareness to motivate high-risk populations to get tested.

We are proposing a five-point action plan to help eliminate hepatitis C from BC by 2030:

  1. Refresh BC Hepatitis C Strategy: Work with stakeholders, including citizens impacted by hepatitis C, to refresh and fund a phased plan with defined timelines.
  2. Update Testing Guidelines: To include older adult screening and/or normalized hepatitis C screening for the general population.
  3. More Continuum of Care Resources: Increase capacity (system and individual health care provider) to test, diagnose, assess, monitor, treat and follow up all people living with hepatitis C in BC.
  4. Expanded Awareness: Implement strategies to motivate at-risk populations (age cohort, immigrants, Indigenous people, injection drug users) to seek screening and care for hepatitis C
  5. Decrease Stigma: Address stigma and discrimination towards those living with and at-risk for hepatitis C within the health care system (i.e. hepatitis C education; cultural competence training requirements).

As you seek elected office we want to know if you support our objectives.

Question: Do you support PHCN’s 5 Point Plan to help eliminate hepatitis C from BC by 2030?

Yes                                                 No

Our vision is for a British Columbia free from new hepatitis C infections with the best possible care and treatment for those living with the virus.

 

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

Survey participants needed ASAP!

Ledipasvir/Sofosbuvir (Harvoni) Survey LogoTwo cheap jerseys months cheap nba jerseys into cheap jerseys PHCN‘s Yet Treatment Information K?benhavns Project and the information embodying the resource has been changed and updated numerous times. One Friday afternoon, for example, was spent updating the project’s Drug Pipeline Diagram, only to realize that the new updates were already out of dated and that the work had to be redone.

With all of the changes taking place around treatment for hepatitis C, it’s an exciting time to be following the upcoming drugs through the drug approval process in Canada and BC.

During the past summer, for example, one of the drugs, Incivek, which had once emerged with promise in the fight against hepatitis C but required interferon, was discontinued by its maker, Vertex, as newer, improved therapies, not requiring interferon, advanced.

This announcement came on the heels of Vertex’s earlier announcement that it was ending its hep C research and development program.

But it’s not just an exciting time to watch and wait as the next generation of therapies advance through the drug pipeline, it’s also a great time to get involved, have your voice heard, and possibly help as decisions are made regarding newly emerging drugs!

On that note, PHCN requires survey participants with hep C or living with/caring for someone with hep C ASAP!

The survey’s link is: http://www.fluidsurveys.com/s/CADTH_Led_Sof_PHCN/

The survey includes 36, mostly multiple choice, questions that are divided into 5 sections. The sections that don’t pertain to you can be easily skipped. The survey’s 5 sections ask about:

  • The impact of hep C on your life (8 questions)
  • Your experience with current hep C treatments (9 questions)
  • The impact on caregivers (4 questions)
  • Your expectations and experience with Harvoni (ledipasvir/sofosbuvir) after taking the treatment (10 questions)
  • Your expectations of (Harvoni) ledipasvir/sofosbuvir (5 questions)

Survey responses are anonymous (we don’t know your name or other information about you). The information gathered will be used as part of a patient group input report about the above topics for the Canadian Agency for Drugs and Technologies in Health (CADTH). By completing the survey you accept that Pacific Hepatitis C Network (PHCN) can use the information gathered in the survey in our patient group input report for CADTH.

The patient group input reports requested by CADTH are an important step towards getting new treatments for hep C more widely available in Canada and BC. You can be a part of this process!

Please email hepctip@pacifichepc.org for more information.

Thank you for taking the time to voice your opinion and help advocate for a better tomorrow!