Category Archives: Advocacy

CROI 2017 by Lucinda K. Porter, RN

CROI 2017 by Lucinda K. Porter, RNLucinda K. Porter

This is a collection of blog posts written by Lucinda K. Porter, RN, a hepatitis C writer who attended this year’s Conference on Retroviruses and Opportunistic Infections (CROI). The blog posts below highlight hepatitis C studies presented at the conference that stood out to her.

Please scroll down and click on the blog tittles that interest you.

Sampling of CROI 2017 Meeting Highlights Written by Lucinda K. Porter, RN

CROI 2017

The Conference on Retroviruses and Opportunistic Infections (CROI), an annual preeminent HIV research meeting, was held in Seattle, Washington, February 13-16 this year. CROI gathers scientists researching epidemiology and biology of human retroviruses and associated diseases to discuss their findings.

More information about the CROI and the studies that were presented there can also be found in our blog post CROI 2017 Hep C Highlights Part I.

“Creating a world free from hepatitis C one step at a time” -Lucinda Porter

CROI 2017 Hep C Highlights Part II

CROI 2017 Hep C (HCV) HighlightsCROI 2017

The Conference on Retroviruses and Opportunistic Infections (CROI), an annual preeminent HIV research meeting, was held in Seattle, Washington, February 13-16 this year. CROI gathers scientists researching epidemiology and biology of human retroviruses and associated diseases to discuss their findings.

This blog post is a collection of HIV/HCV highlights that were presented at CROI 2017. Please scroll down and click on the subjects that interest you.

More Interesting CROI 2017 Abstracts about HIV/HCV Coinfection

More information about The Conference on Retroviruses and Opportunistic Infections (CROI), or these and other studies can be found in our blog post CROI 2017 Hep C Highlights Part I or on the conference’s website.

CROI 2017 Hep C Highlights Part I

CROI 2017 Hep C Highlights Part ICROI 2017

The Conference on Retroviruses and Opportunistic Infections (CROI), an annual preeminent HIV research meeting, was held in Seattle, Washington, February 13-16 this year. CROI gathers scientists researching epidemiology and biology of human retroviruses and associated diseases to discuss their findings.

This blog post is a collection of HIV/HCV highlights that were presented. Please scroll down and click on the subjects that interest you.

Interesting Meeting Abstracts about HIV/HCV Coinfection

More information about The Conference on Retroviruses and Opportunistic Infections (CROI), or these and other studies can be found in our blog post CROI 2017 Hep C Highlights Part II or on the conference’s website.

PHCN’s Statement about the Successful Negotiations for 3 New Hepatitis C Treatments

PHCN's Statement about the Successful Negotiations for 3 New Hepatitis C Treatments‘No One Left Behind!’

Pacific Hepatitis C Network (PHCN) is very happy to learn that effective March 21, an extensive list of hepatitis C treatments will be available through BC PharmaCare – at far better prices than they previously had been. The high cost of hepatitis C treatment has effectively restricted the numbers of people living with hepatitis C who could access treatment.

Even with lower prices, those restrictions will remain in place until next year. Come March 2018, those restrictions (requiring a liver fibrosis stage of F2 or greater) will be lifted and hepatitis C treatment will be available to any person living with hepatitis C in BC, “regardless of the type and severity of their disease”.

The Province, via the Ministry of Health, co-led the negotiations for new, affordable prices and we at PHCN are both proud of that fact and sincerely grateful. We hope the same for new, hep C drugs that are currently in development and that improve even more on cure rates, tolerability, length of treatment, and treating more than one HCV genotype.

And with these new developments, our work continues! Now is the time to identify and address the barriers still in place that keep those living with hep C from accessing care and treatment: low levels of primary care provider awareness of hep C and treatments; believes about who deserves treatment and who doesn’t; patient education and outreach to those who were diagnosed years ago but are not engaged in care for their hep C. Stigma can and does underlay many of those barriers and must be addressed.

PHCN applauds the ushering in of the first critical step by BC’s Ministry of Health and we urge continued vigilance and collective planning and action to ensure ’No One Left Behind!’ when it comes to hepatitis C care and treatment in BC.

More information can be found here.

Strategies to Address Reimbursement Restrictions

Strategies to address reimbursement restrictionsClick here to view a recording of the February 6th webinar Strategies to address reimbursement restrictions for Hep C treatment: Lessons from Australia.

In collaboration with CanHepC, CTAC, and The Kirby Institute in Australia, CATIE organized this webinar to look at strategies to address Canada’s current restrictive and inconsistent approach to direct-acting antiviral (DAA) access and the lessons we can learn from the Australian model.

Learn from experts like Alison Marshall and Greg Dore of Australia’s The Kirby Institute; and Helen Tyrell of Hepatitis Australia. Listen to a discussion between Adam Cook of CTAC and Action Hepatitis Canada’s Community Organizer, Zoe Dodd.

 

Treatment Access Webinar February 6th at 12-1:30pm

Treatment Access Webinar February 6th at 12-1:30pmClick here for more information and to register for the webinar on February 6th at 12-1:30pm PST.

In collaboration with CanHepC, CTAC, and the Kirby Institute in Australia, CATIE is organizing a webinar looking at strategies to address Canada’s current restrictive and inconsistent approach to direct-acting antiviral (DAA) access and lessons we can learn from the Australian model.

Register now and learn from experts such as Alison Marshall and Greg Dore of Australia’s The Kirby Institute; and Helen Tyrell of Hepatitis Australia. Engage in discussion with Adam Cook of CTAC and Action Hepatitis Canada; Community Organizer Zoe Dodd.

2016 Highlights of a Local Hepatitis C Advocate

2016 Highlights of a Local Hepatitis C AdvocateHepatitis C advocates are essential to bettering the lives of those living with hep C. As we begin 2017, the Hepatitis C Treatment Information Project wanted to look back and highlight some of the 2016 work of Daryl Luster, one of our hep C advocates.

The following is a collection of 2016 articles, events, and resources that Daryl Luster, hep C advocate and president of PHCN, was a part of:

February 11th, 2016

Daryl Luster wrote an editorial about the price of hepatitis C direct-acting antiviral treatments.

February 25 – 28th
The Canadian Network on Hepatitis C’s 5th Canadian Symposium on Hepatitis C Virus

The Canadian Network on Hepatitis C‘s 5th Canadian Symposium on Hepatitis C Virus took place in Montreal, in 2016. It gathered international experts, including Daryl, together to discuss hep C research into topics such as: treatment, immune response, antiviral resistance, HIV co-infected, and hepatitis C prevention and management.

May 11th
14th Annual Genomics Forum – “Global Impacts of Genomics”

This one-day scientific forum brought researchers and collaborators from all of BC’s life sciences sectors together to share information and discuss opportunities for future collaborations. Daryl took part in the event’s afternoon and panel session about global health and spoke about patients, the nexus of healthcare and research.

April 24th

Daryl Luster wrote an opinion piece that was published by The Vancouver Sun about hepatitis C globally and in BC. It spelt out the importance of testing baby boomers and the neurological and gastrointestinal issues that may be caused by the virus.

July 27th, 2016

Daryl Luster wrote an opinion piece that was published by The Vancouver Sun about hepatitis C globally and in BC. It spelt out the importance of testing baby boomers and the neurological and gastrointestinal issues that may be caused by the virus.

October 18-19th
Action Hepatitis Canada BC Regional Meeting

In our continuing commitment to Action Hepatitis Canada (AHC) and in his role on the steering committee and executive with AHC, Daryl was involved with hosting the meetings in BC. These meetings were part of a cross-Canada series of regional meetings in support of member organizations and the hepatitis community.

October 24th

Daryl Luster wrote an editorial about the newness of hepatitis C direct-acting antiviral treatments and the need to cure whole patients instead of just achieving sustained viral responses.

November 15th

Daryl Luster met 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.

December 1st
World AIDS Day Rally in Vancouver

On this year’s World AIDS Day the hep C and HIV communities stood in solidarity and honoured those they have lost and celebrated the contributions made by community based organizations here, across Canada, and the world. Daryl made a speech urging the Public Health Agency of Canada to rethink the decisions made to grants for HIV and HCV organizations.

Thank you Daryl and all of the hep C advocates who worked so hard in 2016 to speak up for those living with hepatitis C!

Our Top 2016 Hepatitis C Treatment Posts as Clicked by You

Our top 2016 hepatitis C treatment posts as clicked by you are as follows:

Our Top 2016 Hepatitis C Treatment Posts as Clicked by YouThe Top 5 Blog Posts Read in 2016

The Top 5 Facebook Posts that Received the Most Reactions/Clicks in 2016

The Subjects of the Top 5 Tweets Posted in 2016

The Top Email Subjects Received by the Hepatitis C Treatment Information Project in 2016

  • I am thinking about starting treatment and am wondering if you can answer the following questions?
  • I am thinking about starting treatment and am wondering about BC PharmaCare’s liver fibrosis stage F2 or greater treatment eligibility cut off.

May 2017 be a year just as full of exciting hep C headlines and developments as 2016 was. Happy New Year from all of us at the 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.

The Pacific Hepatitis C Network‘s News in Review Newsletter

The Pacific Hepatitis C Network‘s News in Review NewsletterWelcome to the Pacific Hepatitis C Network (PHCN)‘s very first hepatitis C news in review newsletter. This is where we review all of the major issues and events around hepatitis C and hep C treatments. It is an email that includes links to all of our recent blog posts—including the blog post about the big news surrounding the hep C treatment Epclusa (generic name: sofosbuvir/velpatasvir).

EPCLUSA RECOMMENDED BY CADTH

Epclusa (generic name: sofosbuvir/velpatasvir), developed by Gilead Sciences Canada, Inc., just passed its Common Drug Review with the release of the Canadian Drug Expert Committee (CDEC) Final Recommendation. Click here to read more about their recommendation sent to the provinces and territories to help them decide on whether or not to cover the treatment and how to cover it.

HEPATITIS C ADVOCACY HIGHLIGHTS

In October, Daryl Luster wrote two blog posts for the Pacific Hepatitis C Network. Daryl is a hep C advocate who is PHCN’s president, a member of the Executive Steering Committee for Action Hepatitis Canada (AHC), a counselor for the Help-4-Hep helpline, and the administrator of multiple peer support groups. In 2010, Daryl was cured of hep C while participating in a clinical trial. The two blog posts he wrote were:

DAAs: Long Term Effects
AHC BC Regional Meeting: October 18-19

HEP C ABSTRACT HIGHLIGHTS TO BE PRESENTED AT THE LIVER MEETING 2016

The Liver Meeting 2016, the American Association for the Study of Liver Diseases (AASLD)‘s 67th annual meeting, will be held in a week. Last year’s meeting drew more than 9,500 international hepatologists and hepatology health professionals to San Francisco to discuss the latest treatments and research for liver diseases. This year, Boston, Massachusetts, will be hosting the meeting and, as always, the meeting promises to be exciting.

To celebrate the meeting and all of the amazing discoveries that will be presented, the Hepatitis C Treatment Information Project wrote the following blog posts summarizing and highlighting some of what will be presented about hep C treatments:

The Liver Meeting 2016 Hep C Abstract Highlights (Part1)
The Liver Meeting 2016 Hep C Abstract Highlights (Part2)
Live Stream Sessions from The Liver Meeting 2016

THE BASICS SERIES

The Basics Series by the Hepatitis C Treatment Information Project is a series of blog posts about the very basics about hep C and hep C treatments. So far, the series has five issues, entitled the following:

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.