A note of thanks for all those who lobbied for medicine access

Hundreds of people on Manitoulin Island made direct appeals for son’s access to Trikafta

To the Expositor:

I am writing today to inform you and thank you for a medical opportunity that has been granted to my son.

Four years ago, my family actively began lobbying to secure a medicine that corrects the defective gene that causes cystic fibrosis. Our efforts were part of a much larger campaign initiated by Cystic Fibrosis Canada and others. Provincial and federal governments were the target of the campaign. It took many years, but Trikafta (a product of Vertex Pharmaceuticals) has now been made available to many of those who suffer from cystic fibrosis.

I am aware of hundreds of people on Manitoulin Island, in Sarnia, Peterborough, and Ottawa, who made direct appeals for access to Trikafta (originally Orkambi, an older variation) on behalf of my son and others who have cystic fibrosis. Media such as The Manitoulin Expositor, Great Lakes Country 103 and the Sarnia Observer helped create awareness for my son and others like him. Little Current Public School and the Town of NEMI were so kind with their cystic fibrosis day of awareness.  Politically, MPPs Bob Bailey, Rick Nicholls, Jeff Yurek and Michael Mantha all took special interest and action to support those who have cystic fibrosis. Numerous churches also gave my family the opportunity to explain our efforts to secure this medication.

Special mention must also be made to the cystic fibrosis clinic team at Health Sciences North Sudbury for their caring and dedication to my son.

It is too soon to know what affect the medication will have. There is a growing body of evidence that suggests Trikafta will benefit him. Such medication can offer the chance of a normal lifestyle. It may reduce the likelihood of transplants and other devastating scenarios related to people suffering from cystic fibrosis.

We don’t know for sure what the future will hold for my teenaged son. All we asked for was the opportunity to provide him with as normal a life as possible. You have provided him and many others like him with that opportunity.

Thank you,

Zak Nicholls
Little Current