The Cystic Fibrosis gene was discovered in Canada in 1989 at the Hospital for Sick Children. Now, some 20 years later, we have the first medicine to result from that discovery: KALYDECO™. Also known by its generic name, ivacaftor, it is the first medicine to treat CF at the genetic level. Taken twice a day in pill-form, it allows the defective gene to act more normally, allowing the lungs to remain free of mucus and thus discouraging the colonization of harmful bacteria there.
KALYDECO™ was approved for use in Canada by Health Canada in November 2012 for people with CF aged six and older who have at least one copy of the G551D mutation in the CF gene. There are over 1,800 known mutations of the CF gene — the G551D mutation is just one of them and present in approximately 4% of Canadians affected by Cystic Fibrosis. And while there are roughly 100 people in Canada with the G551D mutation, at the present time there are only about 20 of them that fortunate enough to have access to this remarkably effective drug because of their private insurance plans. The remaining 80 patients are waiting and hoping for public funding.
This two-tier system is unfair and – in our opinion – un-Canadian! Countries such as England, Scotland, Wales, the Republic of Ireland and Northern Ireland have all found ways to publicly fund KALYDECO™, and Canada needs to do the same. It is simply unacceptable that KALYDECO™, the first medicine to work at the genetic level, is not covered by our governments while it is available to thousands of patients in other countries, and it is available to Canadian patients who have private drug plans.
If you would like to advocate for public funding for KALYDECO™, you can start by contacting your local Member of Provincial Parliament or Member of Legislative Assembly. They can than influence the people at Alberta Health who are leading the Pan-Canadian Pricing Alliance in the review of KALYDECO™ to act quickly to recommend that all provinces and territories publicly fund this break-through medication.