REGINA – Harold Tendler, 80, spent his entire working life as a farmer near Assiniboia. A few years after selling his farm in 2002, he was diagnosed with idiopathic pulmonary fibrosis (IPF), a disease that scars the lungs and makes it difficult to take in oxygen.
“It’s tough to breathe,” said Tendler. “I used to like to walk but can’t do that anymore. Not very far, anyway.”
Although the cause is not completely understood, genetic factors may play a role in the disease. Two of his brothers passed away from similar afflictions.
“When my brother was diagnosed he had two to five years. I’ve been around longer than that and hopefully I stick around a bit longer.”
Last August, his doctor introduced him to a drug called Esbriet, which is meant to slow the deterioration.
Esbriet is approved by Health Canada and is publicly funded in Ontario and New Brunswick. Tendler has been paying out of pocket for Esbriet for the past year, totaling round $44,000.
“Very expensive. But I talked to my kids, I said, ‘I’m spending your inheritance. They said go ahead’.”
The Canadian Pulmonary Fibrosis Foundation has been lobbying provinces to fund Esbriet. The maker of the drug, Intermune, is also a major sponsor of the organization.
“The government doesn’t go out looking at what orphan drugs are out there for orphan diseases. They wait until someone brings this to their attention and so it’s almost all politics,” said Tom McIntosh with the Saskatchewan Population Health and Evaluation Research Unit.
Saskatchewan’s health minister acknowledges pharmaceutical companies and advocacy groups make their voices heard, but describes the approval process as more formalized.
“It comes down to the efficacy of the drug, the price for the drug, the number of patients that could benefit, and whether or not, frankly, whether we have the capacity within the budget of our drug plan,” said health minister Dustin Duncan.
Saskatchewan spends $3-million a year to fund drugs to treat rare diseases, benefiting fewer than twenty people in the province. However, over the next decade, the number of drugs for rare diseases is expected grow exponentially.
UPDATE:
Saskatchewan’s health ministry announced that as of November 1, it will begin paying for Esbriet under the province’s exceptional drug status program. Patients will have to meet certain criteria to receive funding.
THREE-PART ORPHAN DRUG FEATURE:
Orphan Drugs: The high cost of rare diseases
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