Tim Vallillee of Kingston continues his fight to have the Nova Scotia government cover the cost of a new Cystic Fibrosis drug that could add years to his life. - Nancy Kelly, www.kingscountynews.ca
By Nancy Kelly
When it comes to curing Cystic Fibrosis, Tim Vallillee admits he isn’t a person who is easily discouraged.
Vallillee, who lives with a rare type of CF called G551D, has been pushing the Nova Scotia government to pay for a drug that could extend his life. Since June, he has been lobbying through an online petition to have Kalydeco added to the provincial drug formulary. Clinical trials show the new drug has the potential to improve lung capacity and extend life expectancy.
“It has been approved in Canada, but it has to get on the Nova Scotia list before I could get it,” explained Vallillee.
Currently, Kalydeco is available only to those who took part in the clinical trials. These individuals will continue to have their drugs provided at no cost, but at $410 per pill, the drug is out of reach for Vallillee and many other Canadians.
“The pill needs to be taken twice daily,” he said. “At that cost you are looking at just under $300,000 a year for the medication. We can’t very well cure CF if we can’t afford the cure.”
Despite the fact he didn’t see much movement in the online petition over the summer months, Vallillee remains committed to wading through the red tape and pushing the Kalydeco agenda for him and other Canadians afflicted with CF.
“I plan to keep getting in people’s faces and keeping up the profile till something happens,” said Vallillee.
As a driving force behind the local CF support chapter, Vallillee is now planning the third annual Squash CF Pumpkin Launch, an event that has raised close to $5,000 for CF research over the past couple of years. This year’s event is taking place Nov. 3 at the Kingston arena ball field. Vallillee says it will feature the same “pumpkin-flinging fun” that people have come to expect and been so supportive of.
Vallillee’s petition can be found at www.change.org/en-CA/petitions/anyone-who-has-a-connection-to-cystic-fibrosis-help-get-coverage-for-the-drug-kalydeco-tm. For details on the pumpkin launch visit www.squashcf.org .