Tag Archives: CATIE

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.

Highlights of a Hep C Advocate’s 2015

Highlights of a Hep C Advocate’s 2015Hep C advocates are essential to bettering the lives of those living with hep C. As we are just about to ring in 2016, the Hepatitis C Treatment Information Project wanted to look back and highlight some of the 2015 work of one of our hep C advocates.

The following is a collection of 2015 articles, events, and resources that Daryl Luster, hep C advocate and president of PHCN, was a part of:

February 5 – 6 — Toronto, Ontario

Advocacy training and advisory board meetings with representatives from the Canadian Liver Foundation, Hemophilia Society, Canadian Treatment Action Council (CTAC), Action Hepatitis Canada (AHC), HepCBC, as well as other groups from across Canada.

February 10 — Toronto, Ontario
AHC Steering Committee Meeting

Daryl is part of AHC‘s executive. AHC is a group that unites organizations and individuals to focus increased attention on the response to hepatitis B and C.

February 11 – 12 — Toronto, Ontario
A meeting entitled ‘National Deliberative Dialogue on Integrated HCV Programming and Services‘ with CATIE
As part of day two discussions, ‘Addressing Different Realities and Priorities: A Population-Level Discussion’, Daryl presented on the older adult population and participated in a panel discussion.

February 24 — Richmond, British Columbia

A meeting with representatives from UBC’s Faculty of Science regarding PHCN‘s participation in supporting research that impacts the hep C community. Daryl shared his own hep C experience and that of people in the community.

February 24 – 26 — Richmond, British Columbia

PHCN participated in a conference entitled ‘Frontline Support Workers’ Conference‘ put on by Pacific AIDS Network and CATIE.

February 26 – March 1 — Banff, Alberta

AHC‘s executive meeting and CATIE‘s learning institute meetings
The objective of these meetings was to identify key messages and information from a symposium on hep C. Daryl presented on the meeting’s last day.

February 27 — Banff, Alberta

4th Canadian Symposium on HCV
Symposium theme: ‘Strategies to Manage HCV Infection in Canada: Moving Towards a National Action Plan’. Daryl presented in his roles with AHC and PHCN. His talk was entitled ‘The role for Patient Advocacy in building a Canadian HCV action plan‘.

March 12 — Penticton, British Columbia

Penticton’s Healthy Living Fair
Working alongside Kathryn (RN), the Penticton & District Community Resources Society (PDCRS) outreach person for hep C related issues and harm reduction in the district, Daryl spoke to fair attendees and handed out literature about hep C screening and treatment access.

March 23

Daryl was quoted by BC’s Ministry of Health in their news release about Sovaldi and Harvoni.

March 24

Daryl was quoted by The Vancouver Sun and The National Post.

April 2 — Vancouver, British Columbia

Daryl had a letter published by The Vancouver Sun about hepatitis C in BC and the importance of treatment access.

April 14 — Vancouver, British Columbia

Pacific Blue Cross Workplace Health Symposium
Daryl presented with Alnoor Ramji MD FRCP(C), Clinical Associate Professor, Division of Gastroenterology, UBC. They spoke on hep C treatment and management to help employers better understand how to support employees and the benefits new treatment options may offer.

May 7 – 8 — Vancouver, British Columbia

First Nations Health Authority’s Gathering Wisdom VII event

May 9 — Richmond, British Columbia

Daryl presented and participated in a panel discussion at the Richmond Centre for Disability‘s Invisible Illness Awareness Forum.

May — Ottawa, Ontario

Daryl was in Ottawa raising awareness and talking to MPs about hep C, screening guidelines, and new advances in therapies that can now cure hep C.

July 9 — Richmond, British Columbia

PHCN held an Advocacy Training and Planning Day for hepatitis C advocates from around BC.

July 21 — Victoria, British Columbia

Daryl traveled to Victoria to meet with government officials. He left feeling that the day included some good discussions and was very worthwhile.

July 28 — Vancouver, British Columbia

Daryl was quoted by BC’s Ministry of Health about Holkira Pak.

July 28 — Vancouver, British Columbia

World Hepatitis Day 2015
Spoke at the Vancouver World Hepatitis Day event at Creekside Community Centre on False Creek. Dr Darryl Plecas, Parliamentary Secretary to the Minister of Health, also spoke at this event, indicating great awareness of viral hepatitis in BC.

September 2 – 4 — Glasgow, Scotland

World Hepatitis Summit 2015
Daryl attended the World Hepatitis Summit as a representative for Action Hepatitis Canada (AHC). In his AHC role, Daryl presented about AHC and World Hepatitis Day, hosted a lunch for Canadian summit delegates, and took part in a consultation hosted by the Medicines Patent Pool.

September — Present

Daryl started writing for HepatitisC.net. His posts can be read online.

October 13 – 14 — Toronto, Ontario

Action Hepatitis Canada’s Advocacy Meeting
At the meeting Daryl and Cheryl Reitz, from HepC BC, spoke on hep C advocacy in BC.

October 20 — Windsor, England

Advocacy Meeting Sponsored by AbbVie
At this meeting, Daryl represented AHC. He may have been the only person representing those with hep C who has had the disease.

October 21 — Ottawa, Ontario, via webcam

Canadian Institutes of Health Research (CIHR) Lecture
Daryl was invited to speak to CIHR about advocacy as a member of CanHepC, a new group formed to address hep C issues in Canada.

November 11 – 12 — Vancouver, British Columbia

The 2nd International Hepatitis Cure & Eradication Conference
The meeting gathered hepatitis experts from different disciplines to learn how science can influence public policy to work to cure and eliminate hepatitis. Daryl was one of the meeting’s speakers.

December 4

The American Journal of Medicine (AJM)‘s exclusive hepatitis C interview with Daryl was published.

December 4

Daryl was featured in HCV New Drug Research‘s December newsletter.

Thank you Daryl and all of the hep C advocates who worked so hard in 2015 to speak up for those living with hep C!

Deb and Daryl, hep C advocates, at the 2nd International Hepatitis Cure & Eradication Conference, November 11 – 12, 2015.
Deb, PHCN’s Program Manager,  and Daryl at the 2nd International Hepatitis Cure & Eradication Conference, November 11 – 12, 2015. They are standing in the fourth row from the top. (Photo courtesy of the 2nd International Hepatitis Cure & Eradication Conference)

Forum Making it work: From Planning to Practice

Making it work: From Planning to PracticeThis fall CATIE hosted a national forum in Toronto with the theme Making it work: From Planning to Practice. The forum was designed as a place to dialogue and learn about the front line implications of the newest research and approaches in HIV and HCV prevention, testing, treatment, and care and support. It was attended by 350 people, including those with HIV and/or with or experience with HCV.

Along with other movers and shakers in their fields of expertise, speakers at the forum included such hep C and HIV experts as:

Their speeches and presentation slides can be found online with the links provided above.

One of the reasons we decided to highlight this forum is that the presentations do a really good job at clearly expressing the importance of hepatitis C advocacy and the importance of better care, prevention, and treatment. For example, a slide that stood out was part of Dr. Jordan Feld’s speech illustrating the difference between traditional HIV lobbies and HCV lobbies (presentation time 14:52). It is a possible exaggeration, but one that stood out and brought the point home that more can be done, more needs to be done.

Making it work: From Planning to Practice
The above is a slide that stood out. It was part of Dr. Jordan Feld’s speech and was used to illustrate the difference between traditional HIV and HCV/hep C lobbies (presentation time 14:52). It is a possible exaggeration, but it successfully illustrated the point Feld was trying to make. Click on the presentation’s link to see Feld’s whole presentation.

Summer in Review

sq_homeAs the Labour Day long weekend has come and gone and we look ahead to cooler seasons, the Hepatitis C Treatment Information Project wanted to take a moment to look back at some of the news that you may have missed this summer. For example:

July 15
Health Minister Rona Ambrose wrote a letter calling for the provinces and territories to co-operate with the federal government to help cut the cost of prescription drugs. The link to a CBC article about it is here.

July 17-18
Vancouver hosted the 2nd International HIV/Viral Hepatitis Co-infection Meeting. The meeting focused on treatment and treatment access. It was attended by representatives involved with medical research, treatment advocacy, NGOs, and AIDS service organizations. Glenn Betteridge and Barbara Santosuosso, of CTAC, wrote about the meeting’s highlights and “take-home” points, which included a caution against rushing to treat HIV/HCV co-infection, a need for price reductions/generic products and global treatment access, and the similarities between the HIV and HCV, hep C, epidemics.

In addition, clinical trial results for the treatment Daklinza/Sovaldi were presented. The presented trial included 147 people with hep C genotypes 1, 3 and 4 with advanced fibrosis, cirrhosis, or who had received a liver transplant. 97% achieved SVR 12 weeks after treatment. The researchers working on this trial concluded that increasing treatment time or adding ribavirin wouldn’t have increased chances of achieving SVR.

July 27
The Government of Canada announced a $4.5 million investment into a new national network working to improve the health of Canadians with hep C and to prevent new infections. This network, the National Collaborative Hepatitis C Network, will be made up of more than 60 researchers, health professionals, and partners from across Canada.

August 11
During 2014-2015, CATIE surveyed 326 Canadians living with hep C and assessed their needs. On August 11th, the survey’s findings were published in a report entitled ‘Room for improvement: Knowledge exchange needs of people living with hepatitis C. Some findings reported were:

  • Most survey participants were committed to their hep C care;
  • 46% had never tried hep C treatment, but of those who had tried treatment, more treatments were successful than unsuccessful (22% vs 16%);
  • 80% of survey takers reported that they didn’t know “a lot” about hep C treatments.
Some Summer News from within the Canadian Drug Approval Process

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.