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CF Canada fights for Canadians living with cystic fibrosis
May 2, 2017

Cystic Fibrosis Awareness Month focuses on access to drugs

May is cystic fibrosis (CF) Awareness Month, and Cystic Fibrosis Canada (CF Canada) is launching a campaign to ensure Canadians are aware of the significant challenges around access to drugs many with CF are currently facing. As research breakthroughs and new drugs that can vastly improve the quality and length of life for people with CF become available, it is essential those who can benefit gain access to these advances in health care.

Today, CF Canada has launched a campaign to draw attention to lack of access to Orkambi, a drug that has the potential to change lives for a sizeable segment of the CF population in Canada. This includes a petition to tell provincial governments to make it accessible to those who need it through provincial coverage, an email campaign, as well as a series of advertisements and stories to come throughout the month from people across the country who believe this to be an important issue.

“Despite the hurdles, CF Canada will not give up on Canadians who deserve access to Orkambi,” says Chief Scientific Officer John Wallenburg. “We’re committed to funding leading-edge research, and as we continue to make progress in CF care, more drugs like Orkambi will become available. Ensuring they are accessible is the only way we’ll see the impact of the amazing progress we continue to make.” 

In 2016-2017, CF Canada invested $5 million in CF research, including grants to support innovative science across a broad spectrum of areas relevant to CF, improve the health and quality of life of CF patients, and bridge the gap between research and clinical care. It is the organization’s belief that creating a world without CF can only be possible if the investments being made in research can make their way back to the people who are directly impacted by them.

“It’s time for the provinces to step up and care for those who need it the most,” says CEO Norma Beauchamp. “The bottom line is that Canadians with CF who have the proper drugs are healthier, more productive and able to spend more time enjoying and caring for their families. This is not only a great thing for Canadians with CF, but it will benefit the health care system, other rare disease groups, the economy and society as a whole. Everyone wins.”

While we have come a long way in the fight against CF, there is no cure. Cumulatively, Canadians with CF spent over 24,500 days in the hospital in 2014 – time that could be spent at work, in school or with their families. Canadians can lend their voice to the cause by adding their name to the petition, sharing the videos from the campaign with friends and family over social media, and contacting provincial government to tell them to make Orkambi accessible. 

Orkambi Facts

  • Orkambi is a new medication for certain people with CF ages 12 and over that can improve lung function and reduce the number of pulmonary exacerbations, which can lead to frequent hospitalizations and accelerated lung disease.
  • It has also been shown to increase Body Mass Index (BMI), which is linked to increased survival.
  • It has the potential to benefit 1,550 Canadians living with CF.

CF Facts

  • CF is the most common fatal genetic disease affecting Canadian children and young adults.
  • 1 in 25 Canadians carry an abnormal version of the gene responsible for CF
  • More than 4,100 Canadians live with CF.
  • 1 in every 3,600 children born in Canada has CF
  • Every week, 1 baby in Canada is diagnosed with CF. 

Quotes

“Despite the hurdles, CF Canada will not give up on Canadians who deserve access to Orkambi. We’re committed to funding leading-edge research, and as we continue to make progress in CF care, more drugs like Orkambi will become available. Ensuring they are accessible is the only way we’ll see the impact of the amazing progress we continue to make.”  - John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada

“It’s time for the provinces to step up and care for those who need it the most. The bottom line is that Canadians with CF who have the proper drugs are healthier, more productive and able to spend more time enjoying and caring for their families. This is not only a great thing for Canadians with CF, but it will benefit the health care system, other rare disease groups, the economy and society as a whole. Everyone wins.” - Norma Beauchamp, President and CEO, Cystic Fibrosis Canada

“Among my many other roles, I am a wife, a mother, and a healthcare professional. I am also a woman living and sometimes struggling with cystic fibrosis. Gaining access to Orkambi gives me hope that I will have the opportunity to grow old with my husband, watch my children mature into adults, and choose when I am ready to retire because I have had a full and satisfying career, and not because my illness demanded it,” - Megan Parker, adult with CF, mother of 2


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