© Allison Hewlett. AVH Photography
Tim Vallillee, holds a photo of himself as an infant. He suffers from Cystic Fibrosis but can’t afford the $300,000 per year price tag that comes with a newly approved medical drug.
By Nancy Kelly
FOR THE VANGUARD
(Also with files from AMY WOOLVETT)
When it comes to curing Cystic Fibrosis, Yarmouth native 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,” explains Vallillee, who now lives in Kingston.
The drug, Kalydeco, is a medicine created by Vertex Pharmaceuticals for the treatment of CF sufferers six years and older who have the specific G551D mutation.
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.”
There are only 10 people in Nova Scotia with that particular mutation and only 100 people in Canada with the mutation. But with this success, researchers are now working on similar “cures” for other CF mutations, of which there are more than a 1,000.
With the drug, Vallillee says his life would be significantly improved. He says his lungs would improve by 20 percent and most importantly his life expectancy would be extended.
When Vallillee was born he was given only two years to live. He's beaten the odds, making it it past 45 years. This drug, he says, would help him even more.
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,” he said.
He is working to raise awareness about his and others’ plights with the government so they will cover costs of this drug. Vallillee argues that many CF patients spend long hospital stays, all covered by MSI. The drug would potentially save the government money.
He tried to be a part of a research study that offered a free trial of the drug, but because he was a carrier of Cepacia, an infection easily passed on to other CF patients; he was not eligible.
Meanwhile, Vallillee is 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 .
NOTE: You can read more about Tim Vallillee in this April 2012 story written by Carla Allen of the Vanguard.