Category Archives: Advocacy

Advocacy

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.

Advocacy

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

Advocacy

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.

Advocacy

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.

Advocacy

Requesting Feedback for Patient Input Report Template Changes

Requesting Feedback for Patient Input Report Template ChangesProposed Changes to CADTH’s Template for Patient Group Input to CADTH Common Drug Review and pan-Canadian Oncology Drug Review (Word document from CADTH)

Between September 12th and October 25th, CADTH is collected feedback from patient groups on proposed revisions to their patient input template. To submit feedback, please use the feedback form and email it to feedback@cadth.ca. All feedback will be considered and used to help create the final CADTH template, targeted for use in December 2016.

Noticed Changes to the Patient Input Report Template

  • Word limits for answers;
  • Clear table to report how the patient input was gathered;
  • More directly worded questions wanting concise answers;
  • New questions about patient experiences with the treatment in question;
  • 2 pages of questions about patient group conflicts of interest and funding.

More information about these proposed changes and this request for feedback can be found at Feedback on Proposed Revisions to Patient Input Template for CDR and pCODR.

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

CADTH is an independent, not-for-profit organization responsible for providing health care decision-makers with objective evidence and recommendations to reimbursement programs, such as BC PharmaCare. Their input helps these programs decide whether or not, or how, to provide reimbursement for health technologies, such as drugs, tests, and surgical devices and procedures. Their reviews are Step 4 in the drug approval process for resources, such as hep C treatments, working towards PharmaCare coverage.

Advocacy

Hepatitis C Treatment Stories and Blogs

Hepatitis C Treatment Stories and BlogsThe number of hepatitis C treatment stories and blogs has been growing over the past few years as more and more people have been prescribed direct acting antiviral hep C treatments. As data from those who have been prescribed these treatments continues to emerge, so do the personal treatment stories and experiences from people who have been treated with these new drugs. The following is a list of just a few of the blogs that strive to  share hepatitis C treatment stories and experiences:

Deal with it: Untold Stories of Hepatitis C in Canada
The documentary film “Deal with it” exposes the state of Canada’s Hepatitis C epidemic, one of the most pressing but least discussed health concerns facing the country today. Watch the entire film for free!

Hep
Hep is an award-winning print and online brand for people living with and affected by viral hepatitis. It was added to this list as it has a variety of bloggers who are or were writing about their treatment experience while they were taking or contemplating taking treatment for hep C. (American)

HepatitisC.net
HepatitisC.net is a website by Health Union, LLC, that was developed to provide hep C information and connect those who have been effected by hep C. It publishes articles by patient advocates, caregivers, and healthcare professionals. Daryl Luster, PHCN’s president and someone who has experience with hep C treatment, contributes content to this site. (American)

HepCBC: Personal Stories
This is a collection of personal stories of people who have been infected with hepatitis C. HepCBC hopes that these stories will help readers on their journeys. (Canadian)

Hep BOOMers
Hep BOOMers is a blog mainly written by Elizabeth Rains, a blogger, a baby boomer, and a hep C survivor. She invites participation from everyone in the hepatitis C community, and writes about treatment, finding a cure, and hep C advocacy. (Canadian)

Life Beyond Hep C: Hep C Patients Treatment Journey
Life Beyond Hep C is a Christian-based website where faith, medical resources, and patient support meet to help hep C patients and their families. The website has a subsection, Hep C Patients Treatment Journey, that is written about taking hep C treatment by those who have personal experience with hep C treatment. (American)

Lucinda Porter
Well-known hepatitis C advocate, health educator, and author, Lucinda Porter, writes about hep C, living with hepatitis, and the treatment journey. Porter’s background, as a Registered Nurse with personal experience with hepatitis C and treatment, is also written about by Porter in this blog. (American)

If you enjoy other blogs that strive to share hepatitis C treatment stories and experiences, please send us their links and we may add them to our website and/or add them to another post about hepatitis C treatment story blogs.

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A footnote–or soapbox moment–from this blog post’s writer: Hepatitis C is curable. If you are interested in treatment, please talk to your healthcare provider–and possibly your local government representative–about available treatment options. While researching for this blog post, I came across more websites than I think there should be describing the hep C virus well, but missing the fact that there are now hep C treatments. There are now treatments for hepatitis C with high success rates. Hep C is now curable and there is a growing number of writers who can attest to it!

Disclaimer: The opinions expressed by the bloggers and by people providing comments to the bloggers are their’s alone. They do not necessarily reflect the opinions of the Hepatitis C Treatment Information Project.

Advocacy

Three Hepatitis C Researchers Win 2016 Lasker~DeBakey Award

Three Hepatitis C Researchers Win 2016 Lasker~DeBakey AwardSince 1945, the New York-based Albert and Mary Lasker Foundation has worked to raise public support for medical research. The Albert and Mary Lasker Foundation has done this through recognizing and celebrating breakthroughs in medical research, public education, and advocacy. One of the ways the foundation celebrates the most important breakthroughs in these fields is to annually reward the very best with the Lasker~DeBakey Clinical Medical Research Award.

This year, the Lasker~DeBakey Clinical Medical Research Award will be given to three hepatitis C researchers.  The award’s three co-winners will be Michael J. Sofia,  Ralf F.W. Bartenschlager, and Charles M. Rice.

Michael J. Sofia

Michael J. Sofia will receive the Lasker~DeBakey Clinical Medical Research Award  for his work on the hepatitis C drug sofosbuvir. He is sofosbuvir’s lead inventor and partial name-sake.

Sofosbuvir (brand name Sovaldi) is a treatment for hepatitis C. It can directly target the hep C virus and stop it from making copies of itself. The treatment works by attaching itself to the genetic information, called RNA, to block the virus from multiplying. It is able to cure hep C with shorter treatment times, better cure rates (curing more than 90% of patients), and less side effects than previous hep C treatments. Furthermore, sofosbuvir is also a part of Harvoni and Epclusa, two other new hep C treatments.

In an interview, Dr. Sofia remarked that “It’s pretty astounding to see how this drug has been able to transform people’s lives and certainly really change the future for” people with hepatitis C. (Peter Loftus, 2016)

Ralf F.W. Bartenschlager and Charles M. Rice

The Lasker~DeBakey Clinical Medical Research Award will also be awarded to Ralf F.W. Bartenschlager and Charles M. Rice for their work in developing a way to get the hep C virus to multiply inside lab-grown host cells. This system was then used by Dr. Michael J. Sofia and other researchers to test and create treatments.

The Lasker~DeBakey Clinical Medical Research Award comes with honorariums of $250,000 (USD) for each of the three winners and will be given out on September 23rd, in New York.

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Sources: Scientists Honored for Hep C Research: Three medical researchers are among winners of Lasker Awards by Peter Loftus, published by The Wall Street Journal on September 13, 2016, the Albert and Mary Lasker Foundation’s website, and the 2016 Lasker~DeBakey Clinical Medical Research Award YouTube video by the Albert and Mary Lasker Foundation.

Advocacy

The 5th International Symposium on Hepatitis Care in Substance Users 2

Hepatitis Care in Substance UsersThe 5th International Symposium on Hepatitis Care in Substance Users (#INHSU2016) began in Oslo, Norway, today and will run until Friday. This international conference is the biggest symposium of its kind that focuses on the management of hepatitis among substance users. It is organized by the International Network for Hepatitis in Substance Users (INHSU) and attracts health professionals, researchers, community organizations, substance users, and policy makers yearly. This year, the international symposium’s focus is on epidemiology and public health, treatment and care, and access to care. The following blog post highlights just some of the information that will be presented.

Hepatitis C Treatment Topics Presented at the 5th International Symposium on Hepatitis Care in Substance Users (Part 2)

Summary: This study aimed to provide more information about reinfection rates after successfully completing hep C (HCV) treatment (elbasvir, grazoprevir, and OAT). The study concluded that “follow-up is required to determine the natural course of HCV reinfection in the setting of interferon-free HCV treatment and the impact of viral persistence following reinfection on long-term response rates in this population.” (Dalgard)

Summary: This study demonstrates that outreach screening and hep C treatment within a Drug Treatment Unit is feasible and effective. It also saves money over time.

Summary: This study demonstrates that People Who Inject Drugs (PWID) can successfully complete treatment while continuing to use drugs.

Summary: This study, and the one below it, demonstrates the importance of care and support for those who have taken hep C treatment and were cured. The study suggests that support shouldn’t end with a hep C virus cure.

Summary: This study, and the one listed above, demonstrates the importance of care and support for those who have taken hep C treatment and were cured. The study suggests that support shouldn’t end with a hep C virus cure.

Summary: Yes, however, access to treatment that can cure patients, even hard to treat patients, must increase. The study assessed 509 patients. Fifty-nine of these patients were “…assessed as non-treatable. Main reasons being instability and lost to follow up.” (Ovrehus)

Summary: There are only  a few trials that look at how well patients are able to take their hep C treatment correctly. This trial is one of them.  It enrolled 59 trial participants with different degrees of drug use and found that “…despite high rates of substance use, a community-based model of HCV treatment can support positive HCV treatment outcomes.” (Mason)

Additional information about the abstracts listed above or other abstracts that were part of the 5th International Symposium on Hepatitis Care in Substance Users can be found in the symposium’s programme or in part 1 of this blog post.

Advocacy

The 5th International Symposium on Hepatitis Care in Substance Users 1

5th International Symposium on Hepatitis Care in Substance UsersStudies, Articles, and Press ReleasesThe 5th International Symposium on Hepatitis Care in Substance Users (#INHSU2016) began in Oslo, Norway, today and will run until Friday. This international conference is the biggest symposium of its kind that focuses on the management of hepatitis among drug users. It is organized by the International Network for Hepatitis in Substance Users (INHSU) and attracts health professionals, researchers, community organizations, substance users, and policy makers yearly. This year, the international symposium’s focus is on epidemiology and public health, treatment and care, and access to care. The following blog post highlights just some of the information that will be presented.

Hepatitis C Treatment Topics Presented at the 5th International Symposium on Hepatitis Care in Substance Users (Part 1)

Summary: This study found high numbers of Germans who inject drugs can be treated for hep C but they aren’t being treated for hep C.

Summary: This study found that networks of people who inject drugs (PWID) are ideal for linking people, testing, and treatment services together.

Summary: This study looked at risky behaviour patterns before and after hep C treatment. It found that use of injected drugs decreases while use of opioid substitution treatment (OST) rose. The results support further expansion of hep C care and support for PWID.

Summary: This study found that those who took OST were able to complete 12 weeks of hep C treatment better than those who did not take OST.

Summary: The study shows that combining OST and hep C treatment is important to prevent new infections.

Additional information about the abstracts listed above or other abstracts that were part of the 5th International Symposium on Hepatitis Care in Substance Users can be found in the symposium’s programme or in part 2 of this blog post.

Advocacy

The Hepatitis C Treatment Information Project has been Updated

The Hepatitis C Treatment Information Project has been updatedThe Hepatitis C Treatment Information Project has been updated. Our drug pipeline diagrams have been updated for the month of August, a page about the next generation of hepatitis C treatments and a page for the hep C treatment Epclusa have been added, and details about new and emerging clinical trials have been added to the Clinical Trials Currently Recruiting in Canada page.

For those not Living in Canada’s Major Cities

There are clinical trials currently or about to be looking for participates in cities beyond Canada’s major cities. If you are interested in clinical trials for hep C treatments, but don’t live in Toronto or Vancouver, this may be the time for you to wonder about participating in a clinical trial.

Examples of Canadian Cities Hosting Hep C Clinical Trials

  • Vancouver
  • Barrie
  • Belleville
  • Brampton
  • Calgary
  • North Bay
  • Ottawa
  • Quebec City
  • Regina
  • Toronto
  • Fredricton
  • Halifax
  • Hamilton
  • Moncton
  • Montreal
  • Saskatoon
  • Sherbrooke
  • Victoria
  • Westminster
  • Winnipeg
  • Abbotsford
  • Kingston
  • Mississauga
  • Newmarket
  • Prince George
  • Richmond Hill
  • Sault-Ste-Marie
  • Scarborough
  • St-Jerome

Wondering about Participating in Clinical Trials?

Those participating in clinical trials must meet certain criteria, and, in addition to taking the drugs, are asked to complete questionnaires and submit blood work and other lab results for research purposes. As well as a commitment to the course of treatment, there is also a time commitment to complete all of the data collection required as a participant in the clinical trial.

For those considering participating in clinical trials, talk with a health care provider you trust about your options. Try to gather as much research as you can, and talk with other people who have also participated in clinical trials.

More Information

Interested in clinical trials? Beyond the Hepatitis C Treatment Information Project’s Clinical Trials Currently Recruiting in Canada page, there is also addition information about clinical trials on our Considering Treatment page and our Participating in Clinical Trials page. ClinicalTrials.gov is also a great resource and includes additional information about clinical trials being planned or taking place around the world.