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Volunteer Advocate
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From the Desk of the CEO

It has been an eventful few weeks and we are seeing positive momentum in our fight for access to cystic fibrosis (CF) medications thanks to the determination and hard work of many.

On June 19, 2020, we reached a key milestone with the Patented Medicine Prices Review Board (PMPRB) releasing their new draft guidelines. The PMPRB is an independent federal body that regulates the prices of patented medicines in Canada. Cystic Fibrosis Canada and the CF community have strongly opposed the previous guidelines for their negative impact on access to critical CF medications. 

Read on for the latest news from Cystic Fibrosis Canada.

Advocacy update

We are in the process of thoroughly reviewing the PMPRB’s new proposed guidelines. We hope to see changes that are in line with the recommendations we put forward during the last PMPRB stakeholder consultation. 

The contents of the new revised guidelines will determine how we continue to push forward in our relentless fight to get life-changing CF drugs into the hands of those who need them.

As part of the PMPRB’s current stakeholder consultation, Cystic Fibrosis Canada will prepare a response and share it on our website. Follow us on Facebook and Twitter for regular updates. 

A little over a week ago, we celebrated an important milestone in our fight for access to life-changing CF medications.  The pan-Canadian Pharmaceutical Alliance (pCPA) announced their agreement to begin negotiations with Vertex Pharmaceuticals for the CF modulator drugs Orkambi and Kalydeco. This is great news.

The pCPA is the body that negotiates drug prices on behalf of the public payers, including all provincial and territorial governments and the federal government. The pCPA conducts joint provincial/territorial/federal negotiations for brand name and generic drugs in Canada.

Unfortunately, negotiations do not presently include Trikafta or Symdeko, however we hope that this development will help impact access to these and all CF modulator drugs. For more information, see our Q&A.

While we’re encouraged, we assure you that we’re not taking our foot off the gas. Drug negotiations can take a lot of time and we know that people living with CF don’t have time to wait.

However, it is important to pause and recognise this win and we want to extend our thanks and immense gratitude to you, for your continued support in this fight. Whether you made a donation, volunteered at an event, fundraised in our walk, signed a petition, wrote or met with a member of parliament or shared a post on social media – your support has made and will make a difference. 

The Walk to Make Cystic Fibrosis History: Virtual challenge

Despite being held virtually, our community rallied together for the 16th annual Walk to Make Cystic Fibrosis History and raised an incredible $2 million and counting to help advance critical cystic fibrosis research and care and advocacy for improved access to desperately-needed medications. 

This is an amazing achievement in challenging times and we are so thankful for the support of the cystic fibrosis community.  It speaks volumes about the spirit and generosity of our community for which we are so  grateful. 

More than 3,300 participants embraced this year’s virtual challenge by completing their walk, their way, on their own time, from the safety of their own homes and neighbourhoods. My husband and I took on the challenge of merengue dancing for an hour and I’m still recovering!

Fundraising for the Walk remains open through the summer. Thank you to everyone who completed their challenge and asked their families and friends to support their fundraising efforts. 

Supporting the CF Community through COVID-19

These continue to be uncertain times as we adapt to the evolving impact of COVID-19. Our recent webinar in our Ask the Expert series focused on re-integration, or returning to work, school and daily life, as provinces start to ease COVID-19 restrictions. You can find information on individual provinces’ re-integration plans on our website. 

Additionally, we have a survey underway to assess the use and interest of the CF community in portable spirometers. We invite you to take the survey, if applicable, as this will help us inform our next steps to ensure that people living with CF in Canada have access to home technologies needed to remain safe during the COVID-19 pandemic. The survey closes on June 22nd. 

The CF Canada team is here to support you and you can direct questions to advocacy@cysticfibrosis.ca.

A special occasion

Last week, we wished a happy 90th birthday to Doug Summerhayes, co-founder of the Canadian CF Foundation in 1960. We are all indebted to him and his wife Donna, who worked tirelessly to lay the groundwork for what is now Cystic Fibrosis Canada. Happy Birthday Doug. 

Some difficult changes

Unfortunately, the COVID-19 pandemic has had a significant impact on our financial situation. Like most other charities, we expect a decline in revenue of about 50% this year. At a time when the cystic fibrosis community needs us more than ever, this has been a challenge we have worked hard to navigate. 

To ensure that we will be here for our community now and for the long term, we continue to reduce spending in our operations and programs including some changes to staffing in areas most impacted by the pandemic, such as our events. These are difficult decisions to make, but we are as determined as ever to continue with the critical work that needs to be done for Canadians living with CF and we are grateful for your support during this challenging time.   

Taking a stand against racism

Finally, we want to acknowledge the events which have sparked an important dialogue about systemic racism in Canada and around the world. Cystic Fibrosis Canada is committed to being an ally in the fight against racism.