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The Advocacy Brief – Issue #2 (April 27)

Access to Modulators in Canada Updates

The CF Can’t Wait Provincial Meeting Challenge is off to a great start

Advocates across Canada have already held 18 meetings with provincial elected officials, a strong effort for this early in the challenge. Momentum is continuing to build daily. See our website for all the information you need to run a successful meeting advocating for access to CF drugs.

Join us for a webinar to get your meeting challenge started

Interested in meeting with your elected official but not sure how to get started? Join us on April 29th at 5pm EST for our live webinar: How to Engage with Your Elected Official for Access to CF Medicines. Learn from Chris Black, our BC provincial advocate with 35 years of experience, who last year, along with her team of advocates, met with 90% of federal MPs in BC during the meeting challenge. We hope to see you there.

Date: 29th April 2021
Time: 5pm to 6pm EST (2pm to 3pm PST)
Speakers:

  • Chris Black, Provincial Advocate BC and CF advocate for 35 years
  • Kim Steele, Director of Government and Community Relations
  • Kelly Grover, President and CEO of Cystic Fibrosis Canada

Register now

Going further to end the wait for access to modulators in Canada

Shhhh you’re the first to find out about the launch of our new campaign to call on provincial governments to cover life-saving CF drugs without delay.

On Thursday, April 29th we are launching a petition calling on provincial governments to fund CF medicines, including Trikafta, upon Health Canada approval. Sign the petition and spread the word with your friends and family. Help us reach our goal of 30,000 signatures for Cystic Fibrosis Awareness Month. Let’s go further to stop the wait!

We’ll also launch an online letter template that you can send to your provincial elected official calling upon them to join the fight to get CF drugs funded without delay.

Critical decisions are expected from government bodies in June 2021 that will impact access to Trikafta in Canada. Act now to show your support for urgent access. #CFcantwait

Quebec sets the bar for community consultation on Trikafta

The Institut national d’excellence en santé et services sociaux (INESSS), the body responsible for conducting cost effectiveness reviews for new medicines in Quebec, has invited Cystic Fibrosis Canada to join a focus group as part of their review of Trikafta. A patient round table will also be organized.

These focus group sessions provide an opportunity for representatives from patient groups to discuss the potential and real impact that Trikafta has on the health and well being of people with cystic fibrosis and their caregivers.

We believe this is a promising initiative that ensures patient groups are engaged throughout the process. We’ve reached out to officials at Canadian Agency for Drugs and Technologies in Health (CADTH) to encourage them to consider a similar initiative.

Question time in Alberta

Thanks to the efforts of Alberta CF advocates, Nate Horner, MLA, made a statement in the Legislature on behalf of his constituents affected by CF. In his statement, Mr Horner calls on the Premier and the Health Minister to make Trikafta available to the hundreds of Albertans who need it. Go Alberta!

If you would like to approach your provincial elected official about asking a question during question time, please contact advocacy@cysticfibrosis.ca . We have a bank of pre-prepared questions you can draw from to provoke constructive discussion in the legislatures.


Further Advocacy News

Improving access to Quinsair in Quebec

On April 12, Cystic Fibrosis Canada sent a submission to INESSS for the evaluation of the drug levofloxacin (Quinsair) which is used for the treatment of chronic lung infections.

Chronic lung infections caused by Pseudomonas aeruginosa (PA) is a major and recurrent challenge for people living with CF. Quinsair is an effective treatment option for chronic PA infections and is available in Canada, but remains difficult to access in Quebec. Given the challenges of antibiotic drug resistance, clinicians need a broad range of non-invasive treatments available for their patients.

We’re proud to support the CF community by working to improve access to symptom management medicines as well as high profile drugs like CF modulators. Stay tuned for INESSS’ recommendations for first-line coverage of Quinsair.

Protect Our Access – Stopping Drug Regulatory Changes

This month, Cystic Fibrosis Canada and other patient organizations across Canada are advocating for the millions of patients across Canada whose lives depend on medical breakthroughs. Right now, only 60 per cent of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe.  

Delayed access to life-changing medicines is impacting us all. The government must stop making changes to drug regulations that threaten our access. 

Please support our efforts by sharing this article on your social channels and visit protectouraccess.ca to send a message to your provincial and federal representatives. #protectouraccess

Funding for Rare Diseases in the Federal budget

We were disappointed to see that the 2021 federal budget does not provide enough funding or a framework for a sustainable access system for High Costs Drugs for rare diseases. CF Canada supports a national strategy to improve access to drugs for rare diseases and can partner with the government to leverage resources like our registry for faster implementation.

We will continue to push to improve access to CF drugs that are needed now. To read our recommendations for this strategy please visit our website.

Advocating for access to COVID Vaccines for you

Last Friday, 23 April, we sent letters to the Premiers and Health Ministers of each province, except Quebec, asking for people living with CF to receive vaccines now. We also sent the letter via Twitter to each Health Minister. We asked for people living with CF to receive the vaccine now due to their already extensive health burden and shared a letter we co-authored in the Journal of Cystic Fibrosis on the topic. You can read more about his work on our website.

We also regularly update the vaccines page on our website with the latest information available. We understand that the process of receiving a COVID-19 vaccine has been challenging and we are committed to supporting our community through this time.

You may also want to see the Vaccine Hunters website for a cool resource to help eligible populations find vaccine appointments in Canada.

Progress in vaccinating CF Quebecers

Since April 12, people living with CF have gradually been included in the vaccination phase for people living with a chronic disease in Quebec. We had informed the main decision-makers of our dissatisfaction with changes to the priority order and were glad to see this rectified.  All adults with CF can now receive their first dose of the vaccine anywhere in Québec.

Access to vaccines remains challenging throughout the country.  Please continue to consult the updates on our Website .


Advocate Spotlight

Name: Sandy Stevens
Province: Alberta
Connection to CF: Daughter with CF
Years Advocating: 3+ years
Describe your fondest memory as a CF advocate so far:
“My fondest memory was our 100 letters for 100 days campaign we launched in December 2019 in Alberta.  This campaign was to get our voices heard to our provincial health minister and to have a meeting with him to discuss the current CF issues, in particular access to modulators. We set a goal of 100 letters all being sent on the same day to the health minister asking him for a meeting within 100 days. To our great surprise, over 400 letters were sent.  

Initially, we were denied a meeting but with determination and creative thinking and a strong advocate who would not take no for an answer, we were able to get a meeting with the minister’s chief of staff in February.  From that meeting he agreed we should meet with the Health Minister and in April 2020 it happened.  He listened to us and stated he wanted to work with us. Multiple challenges along the way did not defeat us one bit.  The outcome of the 100 letters for 100 days campaign has been a year of ongoing communication with government officials and the Minister . Now discussions around Trikafta have been added to the meetings.” 

Read more of Sandy’s story.


In The News


Did you miss it?

  • Check out this video from CF advocate, Amanda, showing what it’s like to live with CF and the impact Trikafta can have.
  • Read last month’s Advocacy Brief Issue

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