Fighting for the right to breathe
Wainfleet resident fights for medication to combat cystic fibrosis
Samantha Roy has a bone to pick with the Ontario Ministry of Health.
For the 27-year-old Wainfleet mother of two, it’s about getting access to a medication that would help counter the effects cystic fibrosis has on her life.
It’s called Orkambi and it is claimed to correct the gene defect that causes the disease. It would eliminate the need for many medications, hospital visits and organ transplants for thousands of people living with CF, says Roy.
It also costs $21,000 a month and is only covered by some private benefit plans.
Roy, a supply teacher at McKay Public School in Port Colborne, doesn’t have employment coverage. Her private insurer, she says, says it cannot guarantee approval and typically only covers generic forms of medications, of which there are none in this case.
Cystic Fibrosis Canada describes the disease as the “most common fatal genetic disease.” Current statistics say one in every 3,600 children are born with the disease and live to a median age of 50.
It affects the digestive systems and lungs of the people who have it, complicating and reducing their functionality and consequently affecting the rest of the
body. Roy says her lungs are functioning at 31 per cent.
For her, Orkambi is a chance to get some of her old life back, so she could be more active, play with her sons, Oakley, 4, and Daxton, six months, and cuddle up with her husband without worrying about a coughing fit.
“You can’t use the word cure, but it’s life-sustaining,” Roy says of the medication.
While there are medications for specific, rare strains of CF, Orkambi is the first that would be useful for people with the most common strain of the disease.
There’s a similar medication called Kalydeco that is available on a public plan, yet it is more expensive and only treats a narrow range of patients with a rare strain of CF. That has Roy confused: why can that one be on a public plan and Orkambi cannot?
She says up to this point, the province isn’t willing to negotiate with Orkambi’s manufacturer, Vertex, about a price.
“It’s maddening, to be honest,” Roy says. “Year after year we fundraise and advocate for this kind of medication and it’s there.”
The Canadian Cystic Fibrosis Treatment Society says Canadians have raised more than $250 million for research on the disease. Each year, Roy alone raises $8,000 to $10,000 through various activities.
An email statement from Ministry of Health spokesman Mark Nesbitt outlines why there have been no negotiations: Ontario is a part of the pan-Canadian Pharmaceutical Alliance, which works closely with related jurisdictions to consider new medications and drug products.
First the product is reviewed under the national Common Drug Review process and assessed by the Canadian Drug Expert Committee. Nesbitt writes, “The (committee) reviewed Orkambi in 2016 for patients aged 12 years and older. The review raised concerns about Orkambi’s lack of clinical effectiveness, and the drug was not recommended for public funding.”
Because of that, no negotiations began.
He says Vertex resubmitted Orkambi for review in late February and it’s expected to be reviewed by the committee again in July.
Roy says that’s great, but still worries about the negotiation process to come.
She will continue to fight to make the drug available, not just for herself, but for others, especially children who have the disease.
Officially diagnosed with CF at age nine, Roy has lived with it all her life. She knows what it’s like to feel like she has to give up dreams because of the disease, to take dozens of medications a day and to not be able to fully enjoy some of the small parts of life with her family.
She doesn’t want anyone else to have to go through those hardships.
She is hopeful that persistence will pay off.
“Breathing isn’t a privilege, it’s a right.”