Nova Scotia Health Minister Leo Glavine Champions CF Patients

Cystic Fibrosis Canada Applauds Minister's Commitment Today

HALIFAX, Dec. 12, 2013 /CNW/ - Cystic Fibrosis Canada applauds the assertive commitment made today by Health Minister Leo Glavine to make the life-changing drug KALYDECO™ available to CF patients in Nova Scotia.

In an interview with CBC, Minister Glavine stood up for CF patients, like Carys Nurse and Tim Vallillee, and committed to have his department take action to make Kalydeco available in Nova Scotia should the Pan-Canadian Pricing Alliance process not make progress by early next year.

"Cystic Fibrosis Canada applauds Minister Glavine for his personal leadership in helping CF patients in Nova Scotia gain access to this powerful life-changing medicine," said Ken Chan, Vice President, Advocacy, Research and Healthcare at Cystic Fibrosis Canada. "We strongly urge Health Ministers across the country to join the fight for speedy access to Kalydeco and make it a priority for those who need this drug regardless of which province they live in."

Kalydeco is the first therapy that targets the underlying cause of cystic fibrosis. This drug helps to improve the function of the defective protein, leading to better lung function, weight gain and lower sweat chloride levels. For a CF patient with the specific G551D mutation, access to Kalydeco could lead to a healthier, longer life. The G551D mutation is present in roughly 100 Canadians with cystic fibrosis.

Cystic Fibrosis Canada, the leading advocate for Canadians with cystic fibrosis, is calling on provincial health ministers to join their counterparts in the United States, United Kingdom and Ireland in providing access to this breakthrough drug. The provinces have been in discussions with the manufacturer as part of the Pan-Canadian Pricing Alliance Process since April 2013.

Access to KALYDECO™ in Canada
Of the 4,000 Canadians living with this devastating disease, about 100 CF patients in Canada have the specific G551D mutation of the CFTR gene that can be treated by Kalydeco. (Source: Canadian CF Registry). When taken twice a day with fat-containing food, Kalydeco helps the protein made by the CFTR gene function better, improving lung function and weight gain. (Source: FDA)

Kalydeco has been available to patients in the United States through private insurance or state Medicaid plans since 2012. In 2013, England, Scotland, Ireland and Northern Ireland started funding Kalydeco for use by their patients.

For more information on KALYDECO^TM, visit our dedicated page:

http://www.cysticfibrosis.ca/en/Advocacy/Kalydeco.php

Cystic Fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. As improved therapies have helped to address the malnutrition issues, ultimately most deaths related to cystic fibrosis are due to lung disease. There is no cure.

Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world's top three charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. We invest more funding in life-saving CF research and care than any other non-governmental agency in Canada. Since 1960, Cystic Fibrosis Canada has invested more than $150 million in leading research and care, resulting in one of the world's highest median survival rates for Canadians living with cystic fibrosis. For more information, visit www.cysticfibrosis.ca

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SOURCE: Cystic Fibrosis Canada

Melinda McInnes, Communications Director
Cystic Fibrosis Canada
Email: [email protected]