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AHC Goes to Ottawa
On April 20-21st, Executive Members Adam Cook from CTAC and Daryl Luster from PHCN travelled to Ottawa for meetings with some key Members of Parliament and bureaucrats. They have reported that the meetings were very productive, and they felt our priorities were taken seriously and some new relationships were begun.
The first meeting was with Ms. Bersabel Ephrem, Director General at PHAC, with Dr. Lisa Smylie from the Centre for Comm. Diseases and Infection Control. Claire joined Daryl and Adam for this meeting, and they were able to discuss issues from drug access and an HCV strategy through to cohort testing. They acknowledged that PHAC has felt the influence of the AHC and come to value our important voice.
At the Minister of Health's Office, we met with a Policy Advisor who could be a valuable connection moving forward, allowing us to have some small influence in Minister Philpott's messaging.
MP Bill Casey is the Chair of the Standing Committee on Health. He was very welcomingn and interested, and although he had little knowledge ahead of the meeting about hepatitis C, he was able to appreciate the need for early detection based on personal health issues. He promised to speak to the Minister about our priorities and hadeveral uggestions for government engagement which we will be following up with.
MP Colin Carrie is the Health Critic. He also welcomed Daryl and Adam graciously but was less open-minded, coming to the meeting with some ideas about policy affecting the HCV-positive population that don't really line up with ours. He did however agree to share an SO 31 (A 60-seecond speech in the House of Commons) on hepatitis C, which we will help him prepare.
MP Murray Rankin is NDP, and has been well-educated on hepatitis C issues by our friends at Hep C BC and the PCHN but did not have any previous introduction to the AHC so we thought this would be a good opportunity to build a relationship with him. He also agreed to speak in the House about hepatitis C, and we will continue to cultivate this connection along with the others made during these 2 days of meetings.
Before heading to the airport, Daryl, Adam and Claire visited the offices of the Patented Medicines Price Review Board. Our meeting was scheduled with their Executive Director, but he fell ill and was out of the office for the entire week. We met with Tanya Potashnik , Director Policy and Economic Analysis and Ginette Tognet, Director Regulatory Affairs and Outreach, who were VERY welcoming and happy to discuss drug pricing with us. We are now on their mailing list, and they will engage with us when they release a new discussion paper shortly, as they launch a new direction. You may recall from our pricing posiition paper that we asserted that their formulas and regulations were outdated and need to be revisited, so this was great news to us. They will be relying on the AHC to help bring the patient/user voice to balance out the perspectives of pharma companies and payers.
Overall, a good set of meetings with several great follow up opportunities, so stay tuned!
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As promised, here are some follow ups to the letters we sent out in March:
- Still waiting to hear back from Minister Philpott on the need for a national strategy to address HCV, and from Dr. Taylor at PHAC on the further delay of the screening guidelines.
- Regarding the letter to the Canadian General Managers at AbbVie, Merck, and Gilead, asking them about their choice to price HCV medicines so high: Exec members and our policy analyst Claire had a teleconference with the GM of Gilead this month, which they felt went well and will lead to further conversations, and there is a meeting in Toronto scheduled for May 10 with the GM of AbbVie.
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Hep C Advocacy Briefing:
Screening Guidelines
In December the AHC released a position paper on the need for updated hepatitis C screening guidelines to include screening for those born between 1945-1975, not just those with risky behaviours.
We will be hosting a briefing and Q&A on this
position paper on
Monday May 2 at 12:30 ET.
Please RSVP to Jennifer at jvangennip@actionhep.ca
This is the second of four planned member briefings on our position statements.
Duration will be 1 hr max.
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Remember to RSVP! Deadline was April 25th.
We are planning a regional members meeting in Halifax, NS, June 6-7th.
The Steering Committee will meet the following day, on June 8th.
Members in the Atlantic region please RSVP so that we can meet hotel booking deadlines. Thank you.
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Call for Patient Input:
CADTH is requesting patient submissions for Sofosbuvir / Velpatasvir (SOF/VEL) and the deadline is May 12, 2016.
To prepare patient submissions, consider these 2 webinars:
Webinar #1:
CTAC Patient Group Input Consultation: Sofosbuvir / Velpatasvir (SOF/VEL)
Monday, May 2, 2-3pm ET
Please join CTAC Policy Researcher, Adam Cook, for an informative webinar detailing Sofosbuvir/Velpatasvir, an exciting new treatment for chronic hepatitis C infection.
Sofosbuvir/Velpatasvir will be undergoing review by the Common Drug Review and your input is needed!
Who should attend:
- People living with hepatitis C
- Service providers, medical practitioners, researchers, community workers and caregivers
Click here to register
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Webinar #2:
CADTH: Why it is important, and what now?
The CADTH Symposium was held in Ottawa April 10-12, 2016.
The Canadian Cancer Survivor's Network is hosting a webinar as a follow up. While not associated with the AHC, this webinar may be of value to those wondering about Patient Submissions.
Thursday May 5, 1-2pm ET
Click here to Register.
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Welcome to new AHC Members!
We are pleased to welcome AIDS Moncton, AIDS PEI Community Support Group, AIDS Saint John, AIDS Saskatoon, All Nations Hope Network (Saskatoon), the Ally Centre of Cape Breton, Healing Our Nations and Mainline Needle Exchange as the newest members of AHC!
You can view the full list of members here.
We are now 49 members strong, which grabbed the attention of government officials in Ottawa last week.
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November 9, 2016 | Toronto.
From the website: After two very successful editions of the International Hepatitis Cure & Eradication Meeting, we feel that the time has come to organize a separate International HBV Cure Workshop in 2016.
The format of this workshop will be a one-day translational meeting with invited lectures, oral abstract presentations and poster viewing sessions. In order to ascertain an interactive workshop setting, much time will be allocated to Q&A sessions, roundtable discussions and debates.
For more information click here.
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