Tag Archives: hep c treatment advocacy

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

Acknowledged by CADTH

CADTH NewsThe Canadian Agency for Drugs and Technologies in Health (CADTH) acknowledged and thanked the Pacific Hepatitis C Network for being one of 17 patient groups who have contributed five or more patient input submissions to their Common Drug Reviews (CDR).

CADTH Common Drug Reviews, and the patient group input reports that are part of them, are important steps towards getting new treatments more widely available in Canada and BC. They allow patients to have their voices heard in the Canadian drug approval process. They allow patients to explain what it’s like to live with their diseases day-to-day. They allow patients to explain what nobody else can explain.

CADTH’s first Call for Patient Input was issued in May 2010. Three patient groups responded to it. That first review was for Actemra, a treatment for rheumatoid arthritis. It was said that, “The groups provided insight and their unique perspectives into the CADTH Common Drug Review’s (CDR) assessment of Actemra.” Over the years, the insight has continued to be sent in by patient groups and used by CADTH.

Since 2010, CADTH has received 297 patient input submissions from 114 groups for Common Drug Reviews. This patient input has contributed to 142 final recommendations for treatments to be reimbursed, or not, by our publicly funded drug plans.

Thank you to all of you who have contributed to patient input reports submitted by the Pacific Hepatitis C Network. We couldn’t have written the reports without you!

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

The Canadian Agency for Drugs and Technologies in Health (CADTH) is an independent, not-for-profit organization responsible for providing health care decision-makers with objective evidence and recommendations to help make informed decisions about the use of health technologies, such as drugs, tests, and surgical devices and procedures.

CADTH has brief but interesting videos about itself and patient input submissions posted on YouTube.

CADTH's list of the 17 patient groups that have contributed five or more patient group input submissions
The above is a snapshot of CADTH’s list of the 17 patient groups that have contributed five or more patient group input submissions to Common Drug Reviews over the past five years. The complete article, Five Years of Patient Engagement, can be found online.

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.

MLA’s luncheon

sq_experiencesOn November 18th, the PHCN hosted Honourable Terry Lake, BC Minister of Health, and 15 other BC Government MLAs at a MLA’s luncheon in Victoria. Speeches were made about hepatitis C and the policy changes needed to ensure that more people in BC get tested, treated, and cured of hepatitis C.

Daryl Luster, PHCN Board President, described his experience with hepatitis C—beginning to feel ill, 3 years of tests and worsening symptoms, an ‘accidental’ hepatitis C diagnosis, and a fortunate clinical trial where Daryl, after a fairly debilitating round of new and old hep C treatments, cleared the virus. Daryl spoke of how he wanted to spare other hep C patients the experience of worsening symptoms and not being able to find help for far too long. He made a promise then to work hard to see changes that would make it easier for anyone with hepatitis C to get tested, treated, and cured.

Dr. Mel Krajden, Director of BC Hepatitis Services at the BC Centre for Disease Control (BCCDC), presented as well. Dr. Krajden spoke to the different groups of people with hep C—baby boomers, people who use injection drugs, immigrant populations, and aboriginal communities—and about how each group has specific needs. He said that while the Treatment as Prevention is a good approach for reaching and engaging people who are marginalized, other strategies are required. For instance, for baby boomers, he recommends a ‘Test, Triage, and Treat’ approach.

We spoke to the need for new treatments to be listed with PharmaCare with no unnecessary restrictions as soon as possible. We urged the government to seize the opportunity to be leaders in the fight to eradicate hepatitis C—a very real possibility.

Health Minister Lake spoke to the government’s commitment to addressing viral hepatitis and the ongoing negotiations with pharmaceutical companies for new drug prices. The Ministry of Health sees great value in the ‘Treatment as Prevention’ approach.

We hope that the government also sees that different populations have different needs and we want to be smart and strategic in how needs are met!

In addition, Daryl and Dr. Mel Krajden also met with political staff in Minister Lake’s office as well as with Ministry of Health staff in the Population and Public Health branch to discuss these same issues.

Stay tuned for more Hep C TIP Advocacy News!