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.
Hep 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 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.
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‘.
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
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.
This 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.
As 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:
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.
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.
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.
Between 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.