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Advocacy Update & Latest News from CF Canada: May 22

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

#CFCantWait: ADVOCACY UPDATES

Constituency Member of Parliament Meeting Challenge

As you know, our National Advocacy Network is holding constituency-based virtual meetings with Members of Parliament (MPs) across Canada as part of our Cystic Fibrosis Awareness Month efforts, calling for access to Trikafta now. Our goal is to meet with as many of the 338 federal Members of Parliament as possible. To date, we have met with over 30% of MPs across Canada.

Unfortunately, there are gaps in the targeted ridings across the country, and we are looking for assistance in securing meetings in these ridings. These gaps amount to 151 constituencies, or 45% of MPs. If you have already met with an MP for the Constituency Challenge, send us an email to let us know who you’ve met with and how it went. We will add you to our growing list of community members who are taking action. 

If you are interested in participating, please contact advocacy@cysticfibrosis.ca and put “Constituency Challenge” in the subject line. For more information, please visit our #CFCantWait Constituency Challenge webpage. 

Meeting with the pan-Canadian Pharmaceutical Alliance (pCPA)

Two weeks ago, Vertex met with the pCPA. After the meeting, we were informed that the provinces are not interested in negotiating a price for Orkambi or Symdeko. 

On Wednesday, May 20, Cystic Fibrosis Canada met with representatives of the pan-Canadian Pharmaceutical Alliance (pCPA). They’ve let us know that they are working with their membership to find a way forward on access to CF modulators. On a positive note, they agreed to meet with us again in a few weeks to advise us on the status of their work. We will provide another update at that time.

MORE NEWS

Ask the Experts Webinar: Reintegration During COVID-19

On Wednesday, June 3, Cystic Fibrosis Canada will be hosting another Ask the Experts webinar. This session will focus on reintegration as the provinces begin their plans to lift the public health restrictions related to COVID-19. Dr. Mark Chilvers, a Clinic Director at the B.C. Children’s Hospital, and Annie Thomas-Diceman, a social worker at the Toronto Adult Cystic Fibrosis Centre at St. Michael’s Hospital are our guest experts for the upcoming session. 

As businesses and schools (in some jurisdictions) start to reopen, you may have questions or concerns regarding cystic fibrosis, COVID-19 and reintegration. If you have any questions, we invite you to send an email to hello@cysticfibrosis.ca prior to the webinar, so that Dr. Chilvers or Annie may answer them during the Ask the Experts webinar.

At Cystic Fibrosis Canada, we are committed to providing the information and support that our community needs, especially during this time of uncertainty. If you’d like more information on the current provincial reintegration plans put in place, and would like to stay updated on them, please see our latest updates on reintegration plans by province. 

Canada Emergency Student Benefit Now Available

The Canada Emergency Student Benefit (CESB) is available to students and recent graduates that are not currently receiving the Canada Emergency Response Benefit (CERB), or Employment Insurance (EI) over the four week period for which they are applying to the CESB. Individuals who are working, but not making more than $1,000 before taxes may also be eligible.

The CESB provides $1,250 per month, plus an additional $750 per month for individuals who have dependents or a disability, for four-months, from May 2020 to August 2020. Applications opened earlier this month and are available online

Walk to Make Cystic Fibrosis History—Are you up for the Virtual Challenge?

Have you chosen a Virtual Challenge for this year’s Walk to Make Cystic Fibrosis History: Virtual Challenge yet? If not, there is still plenty of time to register and start fundraising! If you’re in need of some inspiration for your Virtual Challenge, check out these great examples from our community: 

  • @KaidensCareKits will be shaving her head if she reaches her fundraising goal of $10,000!
  • @ekimregew’s son has decided that he will be rollerblading 65 km a week until the end of Cystic Fibrosis Awareness Month.
  • @Jeremy Hall will be organizing a Dungeons and Dragons live stream on May 31.
  • @Andrea Pumfrey, a Kin Canada Champion, committed to taking 10,000+ steps per day until May 31.

Remember, your Virtual Challenge can be whatever you want it to be! If you have a challenge in mind, be sure to share it with us on social media by using the official Walk hashtags, #WalkYourWay4CF and #walktomakecfhistory.

If you’d like to see more Virtual Challenge examples, have a look at our Virtual Challenge blog post which is full of great ideas to help you get started. You can register for the Walk to Make Cystic Fibrosis History: Virtual Challenge on our website. 

COMMUNITY IN ACTION

Kaylee’s Story: a mini-documentary about living with CF

The Chappell family, from London, Ontario,  recently created a stunning mini-documentary, “Inhale,” about what life is like for Kaylee, 8, who lives with cystic fibrosis. The 9 minute video, narrated by Kaylee’s mom, is shareable from YouTube and is a great way to spread awareness about living with CF. 

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