Started 3 petitions
Screen newborn babies in Prince Edward Island for cystic fibrosis
One in 3,600 babies born in Canada has cystic fibrosis (CF), the most common fatal genetic disease affecting children and young adults in Canada. Cystic fibrosis is a multi-system disease affecting primarily the lungs and digestive system, causing severe respiratory problems and making it difficult to absorb nutrients from food. Virtually all deaths caused by cystic fibrosis are due to lung disease. There is no cure. Earlier diagnosis means earlier treatment to prevent irreversible damage to the lungs and digestive system. Newborn screening for cystic fibrosis has been proven to lead to improved weight gain, cognitive function, respiratory and digestive function in babies and children with the disease. That’s why CF newborn screening is currently the standard of care in North America with the exception of Prince Edward Island, Quebec and Mexico. Newborn screening for CF is also the standard of care in all fifty states in the U.S., much of the European Union, and Australia and New Zealand. We call on decision-makers and legislators in Prince Edward Island to support this initiative. Every child born with this devastating disease deserves a healthier start at life.
Provide cystic fibrosis patients with the drug Kalydeco
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.
Screen newborn babies in Newfoundland for cystic fibrosis
Early diagnosis of cystic fibrosis through newborn screening provides identified children with a better start in life.