When Carys was 18 months old, she was diagnosed with a rare form of cystic fibrosis, and struggles with living life the way other kids do. Cystic fibrosis is a rare and fatal disease affecting the lungs and digestive system, and it makes her every breath a struggle. She describes it as feeling like she's underwater.
With this petition, seven-year-old Carys and her family, and dozens of other cystic fibrosis patients across Canada are desperately seeking access to Kalydeco, a breakthrough drug that targets the underlying cause of CF. There is no known cure for CF, but with this drug, Carys could hope for a longer, healthier life and to avoid a lung transplant.
Even though Kalydeco was approved for use in Canada over a year ago, it's still out of reach for families like Carys’ because of its high price. The price negotiations between the provincial governments and the manufacturer Vertex Pharmaceuticals are taking far too long. Fortunately, Nova Scotia Health Minister Leo Glavine has taken a public stance in support of CF patients in his province – and we encourage others to do the same.
For patients like Carys who desperately need Kalydeco, every day that goes by without it means further irreversible lung damage, and that she'll eventually need a lung transplant.
This is now an issue of equitable access. For the past year, those with generous private health insurance have been able to access to Kalydeco and are seeing incredible results. Patients like Carys see this and know that they could be getting better too.Over the past year, the drug has been made available under public health insurance in the US, England, Scotland, Wales, Ireland, France and Germany! We need our Canadian provincial governments to take these negotiations seriously and come to a quick resolution.
On behalf of dozens of Canadian patients whose lives would be changed by having access to this miracle drug please sign our petition and share with your friends.
*The Pan Canadian Pricing Alliance (PCPA) conducts joint provincial/territorial negotiations for brand name drug products to combine the buying power of jurisdictions and increase access to treatment options by improve listing consistency across Canada. The PCPA includes all provinces with the exception of Quebec.
However for a small segment of the CF patient population, a new breakthrough drug called Kalydeco was approved by Health Canada in November 2012. Because of its high price, it is out of reach for ordinary Canadian families. For some twenty plus CF patients with generous private insurance plans, they are now experiencing the clinical benefits of this drug. It has now become an issue of equitable access - a form of two tier system.
Alberta Health has taken the lead on behalf of provinces in discussions with the manufacturer. I am asking you to take a personal interest in this matter and ensure that Kalydeco is accessible through provincial drug plans for those whose health depends on it.