Tag Archives: hep c patient 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!

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

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.

In The Vancouver Sun

In The Vancouver SunLETTER TO THE EDITOR
HepC drugs a step forward

Pacific Hepatitis C Network’s president Daryl Luster had a letter published by The Vancouver Sun today! Within it Daryl set the stage for our continued work with all involved to make sure every single person living with hepatitis C in BC can access new treatments! Read on!!

Click on the image below to make it larger and easier to read. The link to the letter on The Vancouver Sun’s website is: http://www.vancouversun.com/opinion/letters/Police+record+deadly+force+defended/10938923/story.html. It may be on page 2.

vancouversun1

A Hep C Advocate’s February

AdvocacyAs the month changes and we look ahead to warmer seasons full of hope and promise, the Hepatitis C Treatment Information Project wanted to look back and highlight some of the work done last month by one of our hep C advocates.

The following is a collection of meetings and events 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
Action Hepatitis Canada (AHC) Steering Committee Meeting
Action Hepatitis Canada is a group that unites organizations and individuals to focus increased attention on the response to hepatitis B and C–diseases that negatively affect the quality of life of up to 600,000 Canadians and their families, friends, caregivers, and communities.

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, which included presentations from four distinct population groups—indigenous, older adult, immigrant, and people who inject drugs (PWID). A report is to follow.

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 HCV community. Daryl shared his own HCV 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
Action Hepatitis Canada (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 HCV, as well as sharing perspectives with participants. 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 Action Hepatitis Canada (AHC) and PHCN. His talk was entitled ‘The role for Patient Advocacy in building a Canadian HCV action plan‘.

In addition, Daryl’s February was filled with additional meetings with researchers and health care providers, including physicians, nurses, and front-line workers, about such topics as harm reduction.

A Hep C Advocate’s 2014

Luster-Daryl-2015As we have just rung in 2015, the Hepatitis C Treatment Information Project wanted to look back and highlight some of the 2014 work of one of our hep C advocates.

The following is a collection of 2014 articles and resources that Daryl Luster, hep C advocate and president of PHCN,  was a part of:

January 13  –  CADTH Letter  (Canadian Agency for Drugs and Technologies in Health)

February 19  –  Daryl Luster and the work of Pacific Hep C Network  (PHCN)

May 30  –  Highly effective new drugs for hepatitis C jostle for market share: No provincial health system covers the medications, but lobbying is already underway to make sure they do  (Vancouver Sun)

July 17  –  Vancouver Resident Raises Awareness for World Hepatitis Day  (Hello Vancity)

July 21  –  Note to Editor: World Hepatitis Day is a time to rethink the future impact of untreated Hepatitis C in Alberta  (iStockAnalyst.com)

July 25  –  Richmondite Spreads Hep C Awareness  (Richmond News)

August 1  –  Hep Stories: Daryl Luster  (hepmag.com)

October 1  –  Hepc.bull Mention and Pictures on Page 5  (hepc.bull)

October 8  –  ‘If you have money, you’ll live. If you don’t, you’ll die’: B.C.’s Hepatitis C sufferers hope for fast drug approval  (The Province)

November 5 – 6  –  Virology Education  (1st International Hepatitis Cure & Eradication Meeting)

November 13  –  Bristol-Myers Squibb Announces High Cure Rates for Genotype 3 Hepatitis C Using Combination of Daclatasvir and Sofosbuvir in ALLY-3 Trial  (Bristol-Myers Squibb)

November 25  –  Richmond Centre for Disability Empower Series  (Richmond Centre for Disability)

December  –  Hepc.bull Mention and Pictures on Page 4  (hepc.bull)

We also wanted to wish you all a happy new year! May the coming year bring new treatments, medical breakthroughs, and hope.