Tag Archives: hep c 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!

Hep C Advocacy Resources and the 2015 Election

Hep C AdvocacyWhile Canada’s political candidates have been working to get their voices heard, hep C advocates have also been campaigning, raising their voices for a better response to hep C in Canada. Some of those hepatitis C advocates have been helped by hep C advocacy election toolkits. The following are examples of advocacy toolkits geared towards the election but that include advocacy tools that can be useful after election day.

Hep C Advocacy Election Toolkits

Action Hepatitis Canada’s Election Toolkit 2015

Action Hepatitis Canada’s Election Toolkit 2015 includes:

  • The toolkit’s key message – “We now have a cure for hepatitis C, an illness that affects 250,000 Canadians and kills 1000 annually, and we have a public healthcare system that can deliver that cure to those who need it. It is time to work towards the elimination of hepatitis C in Canada.”
  • The toolkit’s key question – “How would your government work towards the elimination of hepatitis C in Canada?”
  • Social media images
  • Suggested tweetable messages
  • An editable letter template

CTAC and YouthCo’s Pan-Canadian PharmaCare Pre-Election Toolkit

CTAC and YouthCo’s Pan-Canadian PharmaCare Pre-Election Toolkit includes:

  • The toolkit’s key message – Canada needs a national drug plan
  • Lists of actions you can take before the federal election
  • Suggested tweetable messages and images
  • An editable letter template
  • Lists of organizations supporting pan-Canadian PharmaCare and other resources

Advocating for those with Hep C Here and Abroad

AdvocatingThis fall, Daryl Luster, hep C advocate and president of PHCN, will be advocating for those with hepatitis C and their support networks here and abroad. The following is a list of the meetings that Daryl is looking forward to being a part of:

October 13-14 — Toronto, Ontario
Action Hepatitis Canada (AHC) Advocacy Meeting
Action Hepatitis Canada is a group that unites organizations and individuals to advocate for increased attention for hepatitis B and C–diseases that negatively affect the quality of life of up to 600,000 Canadians and support networks.
At the meeting Daryl and Cheryl Reitz, from HepC BC, will speak on hep C advocacy in BC.

October 20 — Windsor, England
Advocacy Meeting Sponsored by AbbVie
This meeting will bring together clinicians, policy, and NGO experts from around the world who are working for hepatitis policy change and development. The meeting will examine the World Health Organization’s HCV action plan and will be facilitated by Dr. Rafael Bengoa from the Health Policy program at the Duesto Business School in Spain. Dr. Bengoa develops strategies/action plans for fighting hepatitis and has successfully implemented them in both Spain and Israel.
At this meeting, Action Hepatitis Canada will be represented by two of its executives, Jeff Potts and Daryl Luster. Daryl may be 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
CIHR is the Government of Canada’s health research investment agency. Its mandate is to build scientific knowledge and to translation it into improved health, more effective health services and products, and a strong Canadian health care system.
Daryl has been 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, BC
The Hepatitis Cure & Eradication Meeting
The Hepatitis Cure & Eradication Meeting will gather hepatitis experts from different disciplines to learn how science can influence public policy to work to cure and eliminate hepatitis.
Daryl will be one of the meeting’s speakers. He will talk about his role as a hep C advocate who has also been a patient.

“I’m not a lone voice, I’m many and our voices are our most powerful weapons.” Malala Yousafzai

Survey Takers Are Required

AbbVie 2D–GT4 Survey DotTake this survey if you are living with hep C/if you have had hep C. This survey is open to everyone who has or had hep C. It doesn’t discriminate based on hep C genotype.

Take this survey if you are a caregiver or loved one of someone who is living with hep C/had hep C.

AbbVie 2D–GT4 (ombitasvir / paritaprevir / ritonavir) information is here.

The Canadian Agency for Drugs and Technologies in Health (CADTH) wants to hear from you! They are currently seeking patient input for AbbVie 2D–GT4 (ombitasvir / paritaprevir / ritonavir) and, therefore, the Pacific Hep C Network (PHCN) needs your thoughts, opinions, and experiences for our patient group input report.

CADTH Patient Group Input Reports

The patient group input reports requested by CADTH are an important step towards getting new treatments for hep C more widely available in Canada and BC.

The reports help ensure that health outcomes and issues important to patients are incorporated into the Common Drug Review process in a formal and meaningful way. They help ensure that you can be a part of the process!

PHCN’s Patient Input Surveys

Once again, PHCN’s patient input survey has been redesigned to, hopefully, help you easily voice your opinions and share your experiences.

There are two PHCN Input Surveys

The first survey was written for those with hep C or those who have had hep C. It includes 14 questions, some multiple choice, and is divided into 4 sections. The most important of these sections are ‘Section 2 of 4: Your Expectations of AbbVie 2D–GT4 (ombitasvir/ paritaprevir/ ritonavir)’ and ‘Section 3 of 4: Your Experience with AbbVie 2D–GT4’, if you have been treated with AbbVie 2D-GT4. If you haven’t taken AbbVie 2D–GT4, the survey lets you skip this section.

The second survey was written for loved ones or caregivers of those living with hep C/have had hep C. It includes 7 questions divided into 2 sections.

If the surveys don’t focus on something you would like to add, please use a textbox and include it as one of your answers. Some of the questions require answers but others were written to, hopefully, help you share your experiences or voice your opinion.

Survey responses are anonymous (we don’t know your name or other information about you). The information gathered will be used as part of a patient group input report for CADTH. By completing the survey you accept that PHCN can use the information gathered by it in our patient group input report for CADTH.

The survey links will only remain open until September 21st, so please complete a survey and share the survey links with others ASAP/before the September rush.

Email the Hepatitis C Treatment Information Project for more information about the surveys or for more information about AbbVie 2D–GT4 (ombitasvir / paritaprevir / ritonavir).

Thank you for taking the time to voice your opinion and help advocate for a better tomorrow.

Mr. Luster Goes to Victoria

Mr. Luster Goes to VictoriaCharacters:
Setting:

Monday, July 21, at the BC Legislative Buildings, Victoria, BC.

Plot:

Daryl Luster went to Victoria on Monday for a full day of meetings with government officials and was warmly welcomed. He left Victoria feeling that the day included some good discussions and was very worthwhile.

Themes and Topics Discussed During Mr. Daryl Luster’s Meetings:
  • Treatment as prevention (TasP) shouldn’t be considered as the main or only way to change hepatitis C in BC. In the drive to cure individuals and eradicate hepatitis C in BC, strategies against hep C must be specifically designed to meet the needs of specific populations.
  • The impact of baby boomers with hep C on the health system.
  • The opportunity the new medications provided for disease elimination.
  • The need for more resources for awareness, screening, and for a coordinated strategy.

Mr. Smith Goes to Washington is a significant picture. It is significant because it emphasis democracy in action. I consider it a real privilege and a real experience to have played even a minor part.” ~1939 Mr Smith goes to Washington Trailer 

Daryl Luster

PHCN’s Advocacy Training and Planning Day

Advocacy Training and Planning Day on July 9thPHCN’s Advocacy Training and Planning Day

PHCN held an Advocacy Training and Planning Day on July 9th in Richmond for hepatitis C advocates from around BC.

The Advocacy Training and Planning Day was led by Ryan Clarke of Advocacy Solutions and covered topics from effective advocacy strategies to how to advocate in person and how to effectively tell your own story.

Some tips to keep in mind while telling your own story are to keep your story short, clear, compelling, and to keep your audience in mind. Another tip is to make sure that what you are planning on saying would make sense to a twelve year old boy.

PHCN’s Advocacy Training and Planning Day and Hep C Treatments

Ryan Clarke’s advocacy training included a section about the drug approval processes in Canada as well. Ryan talked about Health Canada, CADTH and Common Drug Reviews, the pan-Canadian Pharmaceutical Alliance, and PharmaCare and the Drug Benefit Council (DBC). Some of the information discussed is part of TIP’s Approval Process information. Ryan once worked within the government so it was interesting to hear about the process from a different perspective.

PHCN’s Advocacy

One of the jobs PHCN takes seriously is advocating for systems changes that benefit all people living with hep C in BC. To date, most of that work has been done by PHCN Board President, Daryl Luster. In the past year and a half, he has met with many MLAs, presented at two MLA luncheons in Victoria, met with MPs in Ottawa, and presented at local, provincial, and national events (additional information and pictures). This September, Daryl is going to be a delegate at the World Hepatitis Alliance and the World Health Organization’s World Hepatitis Summit 2015 in Glasgow, Scottish!

That’s a lot for one person!

In addition, of course, there are issues specific to each provincial region that need to be addressed and other hepatitis C issues that need advocates. We need skilled and able advocates to continue turning up the volume on our loud strong hep C voice in BC! To help with this, PHCN hosted an Advocacy Training and Planning Day.

PHCN’s Advocacy and Hep C Treatments

For more information about hep C treatment advocacy or to become more involved in hep C advocacy, please contact the Pacific Hepatitis C Network (PHCN).

PHCN's Advocacy
Some of the happy and revving to go hep C advocates with Ryan Clarke from Advocacy Solutions (second from the right).

Pictures of Hep C Advocacy

Hep C AdvocacyMay was a rather busy and colourful month for Pacific Hep C Network’s hep C advocates. It was full of travel, meetings, events, and hep c advocacy.

During all of these outings, PHCN hep C advocates worked to educate the community about hepatitis C. The advocates explained the importance of getting tested for hep C and the treatments that are or will be available to cure hep C. They worked to advocate for those who’s lives have been touched by the disease and to remind everyone that there is hope beyond a diagnosis.

The following are just a few of the pictures that were taken along the way:

First Nations Health Authority event
First Nations Health Authority‘s event Gathering Wisdom VII, May 7-8.

Richmond Centre for Disability's Invisible Illness Awareness Forum
Richmond Centre for Disability‘s Invisible Illness Awareness Forum, May 9th. PHCN’s president, Daryl Luster, presented and participated in a panel discussion. He is fourth from the left.

Pictures of Hep C Advocacy
Daryl Luster, President of the Board of Directors at PHCN, with Action Hepatitis Canada‘s Executive Committee Chair, Patricia Bacon, and Alice Wong, MP for Richmond BC. 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.

Pictures of Hep C Advocacy
Daryl Luster, President of the Board of Directors at PHCN, with Action Hepatitis Canada‘s Executive Committee Chair, Patricia Bacon, and Carolyn Bennet, MP for St. Paul’s, a constituency located in Toronto, Ontario.

Pictures of Hep C Advocacy
Pacific Blue Cross Workplace Health Symposium, May 14th. Daryl Luster 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.

Penticton’s Healthy Living Fair

Penticton’s Healthy Living FairPacific Hep C Network‘s president, Daryl Luster, travelled to Penticton, BC, for Penticton’s Healthy Living Fair last weekend. He was a guest of Kathryn (RN), the Penticton & District Community Resources Society (PDCRS) outreach person for hep C related issues and harm reduction in the district. Kathryn is also a PHCN member. Working alongside Kathryn at the health fair, Daryl spoke to attendees and handed out literature about hep C screening and treatment access.

Penticton’s Healthy Living Fair
Daryl Luster and Kathryn at Penticton’s Healthy Living Fair