Advocacy Update & Latest News from Cystic Fibrosis Canada: November 21

NOVEMBER 21, 2020

Please see below for the latest news and advocacy updates from Cystic Fibrosis Canada this week:

#CFCantWait: ADVOCACY UPDATES

Trikafta to be Submitted to Health Canada for Review

On November 9, 2020, Cystic Fibrosis Canada received information that a decision had been made by the manufacturer to bring new CF medicines to Canada. On November 17, The Minister of Health, Patty Hajdu,  publicly confirmed that an application to bring Trikafta to Canada is in progress and with a ‘priority review’ to speed up the approval process with Health Canada. We continue to monitor the Health Canada website for Trikafta’s submission.

Once a submission is completed and Trikafta is approved by Health Canada, it is assigned a maximum price that can be charged for the drug in Canada, goes through a cost-benefit analysis and, depending on the outcome all of that, will go to the pan-Canadian Pharmaceutical Alliance (pCPA), through which the public drug programs negotiate a price with the manufacturer. 

We have called on the federal Health Minister to provide an aligned review, which would combine the Health Canada, maximum price setting, and the cost-benefit analysis to under a year. We also called on the federal Health minister and the pCPA to coordinate efforts  so that Trikafta can move quickly and seamlessly from the review process to price negotiations. As the pCPA is currently negotiating prices for Orkambi and Kalydeco (other therapies developed by the same manufacturer as Trikafta,) we have called on the pCPA to negotiate Trikafta at the same time and to expedite the process. There are no time limits to pCPA negotiations, so we need to keep the pressure on.

For more information, visit our website.

All-party Caucus Meeting

On November 20, Cystic Fibrosis Canada hosted the first meeting for the all-party emergency access to Trikafta caucus. The creation of this all-party caucus was an outcome of an all-party emergency meeting that we previously hosted with Members of Parliament and Senators on securing access to Trikafta. The meeting was joined by CF Get Loud and the CF Treatment Society.

At the meeting, caucus members discussed working together to develop an all-party access plan. This includes ensuring that the Minister of Health holds up her commitment to fast-track Trikafta, to advocate for the broadest prescribing criteria indication possible for Trikafta, and for caucus members and the Minister to talk to their provincial counterparts about moving quickly to reimburse for all of those who need it.

We will provide another update after our next meeting with the caucus. 

MORE NEWS

Celebrating 60 Years of Cystic Fibrosis Canada

It’s our 60th anniversary! To mark this important milestone, we are creating a video time capsule with video messages from our community—messages of hope, encouragement and motivation that future generations can lean on when they need words of support.

We would be grateful if you could submit a short video today noting your advice for future families and individuals who are impacted by cystic fibrosis (CF). You can use our easy online tool to capture your video message. It takes less than two minutes to submit a video!

We will compile these videos into a montage, and share them with the community in the new year. Please note, video submissions will be closed on Monday November 30, 2020.

New Study Examines the Impact of COVID-19 on People with Cystic Fibrosis

A new study recently published in the Journal of Cystic Fibrosis suggests that although the outcomes of COVID-19 in individuals living with cystic fibrosis (CF) were not as severe as originally feared, there is still a range of possible clinical outcomes following a diagnosis, and an indication that the novel coronavirus is not a benign virus for people with cystic fibrosis. This most recent analysis of 181 people with cystic fibrosis who tested positive for SARS-CoV-2 (the infection that causes COVID-19) still suggests that globally, most people with cystic fibrosis who have contracted the virus recover from infection. However seven deaths and 11 admissions to intensive care units (ICU) were recorded among the cases in the study.

This study is a follow-up to earlier study that examined the impact of the novel coronavirus on individuals living with cystic fibrosis, which indicated that individuals with cystic fibrosis did not appear to be impacted by COVID-19 at a higher rate than the general public. 

For more information on the study, please see our news release. 

IN THE MEDIA

• Manufacturer moves to bring ‘life-changing’ cystic fibrosis drugs to Canada
• Simcoe–Grey MPP asks Prime Minister to speed up Cystic Fibrosis drug negotiations
• ‘Now’s the time’: Cystic fibrosis community calls for Canada to fast-track ‘miracle’ drug
• Cystic Fibrosis Canada says ‘life-changing’ drug coming to Canada, but approval months away
• Innovation spurs new sources of funding
• Clearing another hurdle
• Cystic fibrosis drug Trikafta could change lives — if Health Canada approves it
• Joy, hope & optimism: Long battle to bring cystic fibrosis drug Trikafta to Canada is seeing results

DID YOU MISS IT?

• See our last Advocacy Update and Latest News blog post.