Category Archives: Advocacy

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!

Month by Month 2016 Hepatitis C Drug Pipeline Highlights

2016 Hepatitis C Drug Pipeline HighlightsA lot happened in 2016 within the hepatitis C drug pipeline. Some treatments sought approval to be used in Canada and other treatments sought to be listed on PharmaCare’s formulary. The following highlights just some of their 2016 milestones:

2016 Hepatitis C Drug Pipeline Highlights

January
February
March
April
May
June
July
August

October

December

Have we missed any events in our list of 2016 hepatitis C drug pipeline highlights that you feel should be included? Send us an email and we may update this post.

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.

To treat or to wait? That may be the question with hep C treatment.

To treat or to wait? That may be the question with hep C treatment.To treat or to wait? Only you and your doctor–and possibly BC PharmaCare–can decide whether you should begin hepatitis C treatment now or wait. However, there are resources that may be able to help you answer that question or to think about the factors one may want to think about when considering treatment for hepatitis C. For example, current state of health, virus genotype, work and family circumstances, as well as financial considerations, may all be factors that can influence if, and when, a person decides to try to treat their hepatitis C.

Basic Facts about Hep C Treatment to Consider

Historically, treatment for hepatitis C has been difficult and long – up to a year. However, even now, when newer treatments boost shorter treatment times (8 – 24 weeks) and much less side effects, patients may still face treatment difficulties. A few patients still find that the new treatments are impossible to complete health-wise or find that treatment is too disruptive, given their current life circumstance or health situation. Therefore, patients still decide, or are advised by their healthcare providers, to delay treatment, even when new treatments are available.

Also–and this one is a big one–one should be aware that even newer, possibly better, hep C treatments are on their way.

Resources Weighing the Risks and Benefits of Treating or Waiting to Treat Hepatitis C

Resources Designed to Help You Talk to Your Doctor

Peer Supports

There are a number of support groups and hotlines available to support you and to answer your questions. Going online is a great way to find local groups and connect to communities through social media, especially on Facebook.

However, one of your best resource when considering whether to treat on not to treat will always be your own healthcare provider or a healthcare provider. They can talk to you about your different health concerns and weigh in on whether they think treatment is right for you while knowing you and your medical history.

To treat or not to treat? That is still a question asked and still one that should be asked.

Please contact us at hepctip@pacifichepc.org or check out our Considering Treatment page for more information.

Hepatitis C Genotypes: The Basics

Hepatitis C Genotypes: The BasicsHepatitis C Genotypes

The hepatitis C virus (HCV) has different types or strains called genotypes. Some resources say eleven hep C genotypes, with several different subtypes, have been identified throughout the world. Only six of them are common. The most common HCV genotype in Canada is HCV genotype 1 (named genotype 1 as it was the first hep C virus type to be discovered). HCV genotype 1 has two sub-genotypes:  1a and 1b.

Did you know?
Most people with the hep C virus are infected by just one virus genotype, BUT a person can be infected with more than one type at the same time. This makes harm reduction and prevention important when someone has hep C.  Prevention and harm reduction work to not only protect those who don’t have hep C, but protects someone from being infected with different genotypes of the virus.

Where the Different Hep C Genotypes are Most Common

  • Genotype 1 in North America
  • Genotypes 1, 2, and 3 globally
  • Genotype 4 in northern Africa
  • Genotype 5 in South Africa
  • Genotype 6 in Asia

Hepatitis C Genotype Testing

To find out what genotype a person with hep C has, blood is drawn at a lab and a HCV RNA test is done to look at parts of the virus’ genetic makeup called nucleotides. As explained above, every hep C genotype has a unique genetic makeup.

Hepatitis C Genotypes and Hep C Treatment

The type of hep C infection one has doesn’t determine how bad their hep C symptoms may be. For example, having HCV genotype 1 doesn’t mean that a person will experience fewer hep C symptoms than someone with genotype 2 hep C. However, hep C genotypes do affect a treatment’s possible success and its side effects. Therefore, right now, each hep C genotype has its own treatments and set of treatment lengths that work best against it. For example, the treatment peginterferon and ribavirin is more likely to work for people who have genotype 2 or 3, and do so with fewer side effects, than they are when those drugs are prescribed to a person with HCV genotype 1. Therefore, every genotype has its own unique treatment.

To be continued…please look out for our upcoming blog posts about hep C geotype 1 treatments and genotype 2-6 treatments.

Additional Resources

HCV / HIV Co-Infection Topics Presented at #EASLsp

HCV / HIV Co-Infection Topics Presented at #EASLspThe European Association for the Study of the Liver (EASL) / American Association for the Study of Liver Diseases (AASLD)’s two day special conference, entitled “New Perspectives in Hepatitis C Virus Infection – The Roadmap for Cure” (#EASLsp), was held last week in Paris, France. The conference has gathered experts to review and analysis current hepatitis C (HCV) treatment data, published and unpublished. This blog covers just some of what was presented about HCV/HIV co-infection.

Some HCV / HIV Co-Infection Topics Presented in Paris

The links below may need to be clicked twice or waited for in order to work.

Summary: Due to the complex way liver disease develops, the higher risk of hep C and re-infection, and the risk for drug interactions with antiretrovirals, frequently not addressed in clinical trials, those with HCV/HIV co-infection still pose challenges.

Summary: HCV/HIV co-infection is prevalent in those who use opiates. However, little is known about the results of opiate replacement treatment (ORT) for those with hep C and those who are HCV/HIV co-infected who are in ORT. This study saw that HCV/HIV co-infected patients received more methadone when compared with patients without infections. No differences in methadone doses were found in those with hep C. It also showed that hep C doesn’t cause any difference in whether or not the opiate replacement treatment (ORT) will work long term.

Summary: This study looked at the effectiveness of direct-acting antivirals (DAAs), a type of hep C treatment, in real life. It looked at interactions between HCV/HIV treatments and monitored liver fibrosis, transaminases, and alpha-fetoprotein (AFP) changes while taking treatment. The study found that direct-acting antivirals (DAAs) are effective and improve liver fibrosis, hepatic cytolysis, and AFP.

For more information about studies presented at the EASL / AASLD special conference in Paris last week, please find Part I of the conference’s blog series here and Part II here.

The Roadmap for Cure Conference in Paris (Part II)

The Roadmap for Cure Conference in Paris (Part II)The European Association for the Study of the Liver (EASL) / American Association for the Study of Liver Diseases (AASLD)’s two day special conference, entitled “New Perspectives in Hepatitis C Virus Infection – The Roadmap for Cure, started yesterday in Paris, France. The conference has gathered experts to review and analysis current hepatitis C treatment data, published and unpublished.

Hepatitis C Treatment Topics Presented at the Roadmap for Cure Conference (Part II)

The links below may need to be clicked twice in order to work.

Summary: High cure rates

Patients with Genotype 3 HCV Treatment* Weeks SVR12 / SVR24
Treatment-naïve without liver cirrhosis SOF+RBV 24 95%
SOF+ DCV 12 95%
Treatment-experienced with cirrhosis SOF/VEL 12 85%
Treatment-naïve with cirrhosis 91%
Treatment-experienced with cirrhosis SOF+RBV 24 42%
Treatment-naïve with cirrhosis 58%
Treatment-naïve without cirrhosis SOF+DCV 12 98%
Treatment-naïve with cirrhosis SOF+DCV 12 58%
Treatment experienced without cirrhosis SOF+DCV 12 92%
Treatment experienced with cirrhosis SOF+DCV 12 69%
Treatment-naïve with cirrhosis SOF/VEL + GS-9857 6 83%
SOF/VEL + GS-9857 8 100%
Treatment experienced with cirrhosis
Treatment-naïve without cirrhosis ABT-493 + ABT-530 12 96%
Treatment-naïve without cirrhosis ABT-493 + ABT-530 8 97%
Treatment-naïve with cirrhosis ABT-493 + ABT-530 +/- RBV 100%
* SOF = Sovaldi, RBV = ribavirin, DCV = Daklinza, VEL = velpatasvir, ABT-493 & ABT-530 = glecaprevir & pibrentasvir

Summary: This summarizes the recent advances in knowledge about how the virus infects, reviews compounds in preclinical and clinical development, and discusses perspectives of entry inhibitors for antiviral therapy and prevention of liver disease and cancer.

Summary: Stabilization or improvement of liver disease and prevention of post-transplant recurrence of HCV infection are two reasons to treat patients who are waiting for liver transplants. Treating patients waiting for livers can also reduce post-transplant recurrence and deaths while on transplant waitlists. However, more research is required into whether treatment helps to lessen the need for transplant.

Summary: This paper examines the clinical, PRO, and economic consequences/impact of hep C and calls for the benefit of treatment and achieving SVR to be assessed. This approach will help patients, healthcare providers and policymakers reach better informed decisions about this important disease, and its treatment to better benefit the patient and the society as a whole.

Summary: For the elimination of hep C, mass screens must happen first; risk-based screenings aren’t enough. Screening strategies must also be uniquely designed to fit the epidemiology of infection. It must also fit with where the screen is taking place, the population it is targeting, and the population’s resources. Screening must be designed around access to resources, tests, and care.

Summary: We are working toward hep C world elimination and in parts are improving mortality. However, access to treatment remains the major challenge. Whether hepatitis C becomes the first chronic viral infection to be eradicated without a prophylactic vaccine remains to be shown. However, a  vaccine is still desirable, but is still also only a future possibility.

Summary: This study suggests that patients continue to spontaneously clear HCV up to at least 12 months following initial infection. Given the high costs of treatment, it may be important to give sufficient time for patients to spontaneously clear infection before initiating treatment.

Summary: Natural resistance-associated substitutions are common in all hep C genotypes, and up to 10% of patients show resistance, though only the so-called major mutations seem to have a clinical relevance. Thus, qualitative identification of only major natural resistance-associated substitutions (rather than all) is required to properly guide DAA treatment.

Please look for another blog post in this series about hep C treatment information and clinical trials that were discussed at the EASL / AASLD special conference in Paris this week. Part I of this blog series can be found here.

The Roadmap for Cure Conference in Paris (Part I)

The EASL / AASLD's conference in ParisThe European Association for the Study of the Liver (EASL) / American Association for the Study of Liver Diseases (AASLD)’s two day special conference, entitled “New Perspectives in Hepatitis C Virus Infection – The Roadmap for Cure, started today in Paris, France. The conference has gathered experts to review and analysis current hepatitis C treatment data, published and unpublished. Their focus will be on:

  • Epidemiology of hep C in different areas of the world
  • Virology and pathogenesis
  • Natural history of the disease and impact of the new treatments on the long term consequences of chronic hep C infection
  • Assessment of the disease
  • Therapy, with special emphasis on difficult-to-treat populations or unsolved issues
  • Eradication strategies (EASL 2016)

Some Hepatitis C Treatment Topics to be Presented in Paris (Part I)

Summary: This looked at clinical trial results for three Sovaldi (sofosbuvir) based treatments and possible reasons for relapse. It ruled out the idea that “…the role of a potential incorrect recognition, by the commonly used inverse dot blot genotyping method, of a chimera 2k/1b virus…” as a reason for relapse with sofosbuvir and ribavirin in genotype 2 infected patients. Because of this, it is believed that treatments in phase III studies will cure all patients with genotype 2 HCV after only 8 weeks of treatments.

Summary: Current clinical trial data has shown success in  curing in 3-4 weeks with DAA combos for “ultra-rapid responders”. As a result, it may be possible to individualize treatment times further in the future.

Summary: Treating post-transplant patients has become easier with the new treatments, but it still remains less than ideal because of three limitations. These limitations are: a lack of data looking at treatment without ribavirin (a drug hard to take by those with altered GFR and anemia); the increased chance of drug interactions; and lower SVR rates for patients with hep C genotype 3 virus and for those with liver cirrhosis.

Summary: Due to complex liver pathogenesis, higher risk of acute HCV infection and re-infection, and potential for drug interactions with antiretrovirals that are frequently not addressed in registration trials, those with HIV/HCV co-infection still pose challenges. These challenges will be looked at in this presentation.

Summary: This abstract outlines clinical results for those with hep C genotypes 4, 5, and 6. For example, the NEUTRINO trial with Sovaldi (sofosbuvir) plus PR for 12 weeks resulted in a cure rate of 96.5% for GT4 patients and 100% cure for patients with GT5 and GT6 hep C after 12 weeks. Another trial highlight examined Zepatier for GT4 (100%) with RBV added, and GT5 (75% with RBV, 25% without RBV) and GT6 patients (SVR12 80%).

A Quote from the Conference’s Abstracts

The sweetest quote read while reading through these conference abstracts was: “Recent studies from Europe suggested that geographical factors had an impact on possible lower rates of response at the time of genotype specific treatment.” (Alessandra Mangia) Could this mean that researchers may be passed an era of genotype specific treatment and if so, will patients soon be able to follow?

Lastly, this blog post will be continued tomorrow with more information about hep C treatment currently being discussed at the EASL / AASLD special conference in Paris.