Canadian Cystic Fibrosis Treatment Society

03/23/2023

9 years ago Canadian Cystic Fibrosis Treatment Society was created to help CF patients get access to live-saving medicines. From our court challenges to advocacy campaigns, we helped get access. Today's rare disease strategy announcement is the next step.

Today, the Honourable Jean-Yves Duclos, Minister of Health, announced measures in support of the first-ever National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion over three years. Through this, we will help increase access to, and affordability of, effective drugs f...

07/11/2022

Tremendous news from Alberta as children aged six to 11 can now get access to the cystic fibrosis medicine Trikafta! Thank you Jason Kenney and Jason Copping for your leadership in making this announcement. It is an honour to be a part of your official statement.

From our Chair Chris MacLeod on the announcement, "The Canadian CF Treatment Society thanks the Government of Alberta for acting fast to make Trikafta available for children six years and older. This announcement will completely change the course of life for many children living with cystic fibrosis. We thank Alberta for being one of the first provinces to make Trikafta available to adult CF patients last September and children today. We need more provinces to take action like Premier Kenney and Minister Copping to save lives across the country."

Get the latest Alberta government news releases, blog posts, audio statements and videos.

06/21/2022

A statement from our chair Chris MacLeod on the passing of Lilia Zaharieva; a dear friend, cystic fibrosis advocate and great Canadian. May her memory inspire us all to dedicate ourselves to making the world a better place.

04/14/2022

We are thrilled that the Honourable Jean-Yves Duclos, Minister of Healthy Canadians has announced that: “The Government will not proceed with the Amendments related to the new price regulatory factors, nor with the requirements to file information net of all price adjustments. This will be reflected in Canada Gazette in late Spring 2022.”

We thank all the patients, stakeholders and Canadians from coast to coast that assisted with advocating for revoking these amendments. We also wish to thank Audrey Boctor and Miriam Clouthier at IMK sencrl/LLP for their incredible advocacy efforts as our legal counsel in the Quebec courts.

This announcement is a tremendous victory for cystic fibrosis patients and all Canadians with rare diseases. Together we made a difference.

Today, our government announced that it will proceed with Amendments to the Patented Medicines Regulations to provide the Patented Medicine Prices Review Board (PMPRB) with new tools to protect Canadians from excessive prices for patented medicines.

03/16/2022

“The decision is important because it gives pretty clear guidance to the federal Parliament about the limits of its powers to legislate in relation to patents.” Great interview with IMK sencrl/LLP's Miriam Cloutier who represented us in The Quebec Court of Appeal case against the federal government's regulatory approach and guidelines over patented drug pricing.

The Appeals Court agreed with arguments presented by the Canadian Cystic Fibrosis Treatment Society to strike down two key provisions of the Patented Medicine Prices Review Board (PMPRB) regulations.

As CCFTS Chair Chris MacLeod said upon hearing the ruling in February, "the PMPRB price regulations threatened access to life sustaining medications for some of Canada’s most vulnerable patients. A reminder that patients, must act without fear or favour, and should never fail to advocate for themselves in the courtroom, boardroom and seek the highest levels of judicial oversight if they firmly believe that Canadian lives are on the line.”

We again want to thank Miriam and IMK for their outstanding counsel and all the advocates who supported us in this important fight which was a win for all of Canada's rare disease patients. Together we made a difference!

The federal government will have to overhaul its regulatory approach and guidelines over patented drug pricing after the Quebec Court of Appeal found a couple of provisions to be unconstitutional and outside the scope of federal jurisdiction over patents, according to a legal expert.

02/28/2022

This Rare Disease Day, we're taking a victory lap on the Quebec Court of Appeal agreeing with arguments presented by the Canadian Cystic Fibrosis Treatment Society to strike down two key provisions of the Patented Medicines Pricing Review Board (PMPRB) price regulations. A win for all rare disease patients!

Thank you again to everyone who joined us in this fight!

02/27/2022

Two years ago, with Dr. Tullis and MPP Jim Wilson, we launched our fight for a portfolio deal that would get Canada's cystic fibrosis patients access to all life-saving CFTR modulators. Thank you to everyone who supported this campaign. Together we made it happen. No one left behind.

02/18/2022

The Quebec Court of Appeal has agreed with arguments presented by the Canadian Cystic Fibrosis Treatment Society, striking down two key provisions of the Patented Medicine Prices Review Board (PMBRP) price regulations as unconstitutional. This is an important ruling for cystic fibrosis patients and all Canadians with rare diseases.

We want to thank our legal team at IMK sencrl/LLP, Audrey Boctor and Miriam Clouthier for representing us in both the original hearing and the appeal.

CCFTS Chair Chris MacLeod said on hearing the ruling, "The PMPRB price regulations threatened access to life sustaining medications for some of Canada’s most vulnerable patients. A reminder that patients, must act without fear or favour, and should never fail to advocate for themselves in the courtroom, boardroom and seek the highest levels of judicial oversight if they firmly believe that Canadian lives are on the line.”

We want to thank everyone who donated to support our legal action action. Together we have made a difference.

01/31/2022

Kalydeco was a game changer for the cystic fibrosis community and led to the creation of the Canadian Cystic Fibrosis Treatment Society in 2014.

Thank you to everyone who had joined us in our advocacy efforts over the years. Together, we've made a difference.

10 years ago today, the FDA approved the cystic fibrosis drug Kalydeco. Chris was the first Canadian to get access to this ground breaking CF treatment and he never stopped fighting until all Canadians had access to life-saving cystic fibrosis medicines.

You can read about the campaign for Kalydeco in Lesson 2 of Beating The Odds. As Chris writes: "With extreme ownership comes extreme responsibility. Not only do you need to advocate for yourself but if you've been blessed with the position, place, and privilege where you can get life-sustaining access to medications and healthcare in a society that looks after the most vulnerable (as it should be) you then have a co-equal responsibility to move heaven and earth so that no one is left behind."

Inspiring words that motivated so many to do so much.

Read the full story by ordering your copy of Beating The Odds here: www.beatingtheodds.ca/getthebook

01/10/2022

"Results showed [Trikafta] led to an 87% reduction in risk of lung transplant, 77% fewer pulmonary exacerbations and a 74% reduction in risk of death." Fierce Pharma reports on Vertex Pharmaceuticals' presentation to the J.P. Morgan health care conference which shared real-world data garnered from more than 16,000 U.S. cystic fibrosis patients taking the CFTR modulator Trikafta.

Canada's cystic fibrosis patients should never again have to wait for access to life-saving medicines.

Vertex Pharmaceuticals is well known for its slew of cystic fibrosis medications, and newcomer Trikafta is pulling its weight. Over the course of 2021, the med clinched reimbursement in 16 countries and launched for kids ages 6 to 11 in the U.S.

12/05/2021

Who couldn't use a little more resiliency to get through this year? This inspirational book from our founder Chris MacLeod can help provide the motivation.

This book – arising from the lessons Chris MacLeod learned dealing with a lifelong health crisis – is a guide to assist others surviving their own unique health challenges and crises. More than that, it can be a guide to living a full and authentic life.

11/30/2021

Our founder Chris Macleod is celebrating Giving Tuesday by sharing the proceeds from his inspirational book Beating The Odds with Cystic Fibrosis Canada and CF Get Loud.

We hope you will also support these organizations doing important research and advocacy work for the cystic fibrosis community.

Chris is excited to celebrate with cheques for Cystic Fibrosis Canada and CF Get Loud! We're proud to dedicate 10% of each book sale to a charitable or non-profit organization that advocates for patients or funds research and innovation. Thank you to everyone who has purchased a copy of Beating The Odds for helping to make these donations happen!

Order your copy of Beating The Odd here and select the organization you would like to direct the proceeds from your book purchase to: www.beatingtheodds.ca/getthebook

11/28/2021

This inspirational book by our founder Chris MacLeod has helped so many people build their resilience. In challenging times, there is no greater gift.

Purchase the book BEATING THE ODDS, 11 Lessons to Overcome a Health Crisis and Lead a More Resilient Life.

11/21/2021

Congratulations to Canadian Cystic Fibrosis Treatment Society founder Chris MacLeod on being invited to speak about his book Beating The Odds at the Johns Hopkins Cystic Fibrosis Center Patient & Family Day 2021.

It's great to see Chris' 11 lessons to overcome a health crisis are helping cystic fibrosis patients and families cultivate resilience in their own lives. Just as they have had a transformative power in his life, he is excited to see the impact they are having upon others after reading his book.

If you know of someone struggling with their health right now, consider sending them a copy of Beating The Odds to help give them the inspiration they need to overcome their challenges.

Thank you to the Johns Hopkins Cystic Fibrosis Center for inviting Chris to speak about Beating The Odds and cultivating resilience in your life at their Patient & Family Day 2021. It was an honour to share the 11 lessons with your community. May his words provide inspiration to your patients and families as they work on sharpening and focusing their resilience.

As Chris says in the introduction to Beating The Odds, "There is not a soul on this planet who cannot execute a winning strategy. You need to start by coaching your perspective."

If you have not yet had an opportunity to read Beating The Odds, you can get the book on Amazon, McNally Robinson Booksellers or directly from the website. Get yours here: www.beatingtheodds.ca/getthebook

11/09/2021

Great interview with Canadian Cystic Fibrosis Treatment Society founder Chris MacLeod about how his challenges of living with cystic fibrosis led him to develop his 11 lessons to overcome adversity in his life and write Beating The Odds.

If you have not already read Chris' inspirational book, you can get your copy here: www.beatingtheodds.ca/getthebook

10% of all book sales go to charitable or not-for-profit organizations that advocate for patients or funds research and innovation, including Cystic Fibrosis Canada and CF Get Loud.

Brian speaks to Chris MacLeod, who is a noted lawyer in Canada and the author of "Beating the Odds"

11/08/2021

Need some ? Let Canadian Cystic Fibrosis Treatment Society founder Chris MacLeod inspire you to overcome adversity and build resilience as he talks with Brian Crombie tonight at 6 pm about his book Beating The Odds and his 11 Lessons to overcome a health crisis and lead a more resilient life. You can listen to the interview on Sauga 960 AM or stream online.

And if you don't already have a copy of Chris' inspirational book, you can get your copy here: www.beatingtheodds.ca/getthebook

10% of book sales goes to charitable or not-for-profit organizations that advocate for patients or funds research and innovation, including CF Get Loud and the Cystic Fibrosis Canada.

11/06/2021

Thank you Premier Caroline Cochrane and Health Minister Julie Green MLA Yellowknife Centre for announcing the Northwest Territories will join all the provinces and territories (with the exception on Nunavut) in funding the life-saving cystic fibrosis medicine Trikafta.

Please urge Premier Joe Savikataaq and Health Minister Lorne Kusugak to join you. CF can't wait.

You can read the full news release here: https://www.gov.nt.ca/en/newsroom/nwt-funds-cystic-fibrosis-drug-trikafta

10/25/2021

This is one of the important lessons in Beating The Odds that gave strength to our fight over the past seven years. If you have not already read Chris' inspirational book, we encourage you to get a copy to help you find the power in your response.

10% of each book sale goes to a charitable or not-for-profit organization that advocates for patients or funds research and innovation. Cystic Fibrosis Canada and CF Get Loud are two of the organizations you can direct your contribution to.

Get your copy of Beating The Odds here: https://www.beatingtheodds.ca/getthebook

As the Canadian Cystic Fibrosis Treatment Society turns seven, Lesson 3 in Beating The Odds speaks volumes to the spirit Chris brought to cystic fibrosis advocacy. His bold and daring approach helped to forever change the lives of so many.

Learn more about his life lessons here: https://www.beatingtheodds.ca/11-lessons