On Rare Disease Day, Cystic Fibrosis Canada Calls for Better Access to Treatments for All

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by Nicole Wetsman |

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Cystic fibrosis patients in Canada may choose to use Flovent (fluticasone propionate), an inhaled corticosteroid that helps reduce inflammation in the lungs, to manage their symptoms. But the cost of such treatment often depends of where they live: In Nova Scotia, Flovent is covered by that provinces’s publicly funded healthcare system; in Alberta, it’s not — leaving patients to potentially pay out of pocket.

Each Canadian province and territory manages its own healthcare system, determining which medications to cover and what extent of care to give its residents. A therapy that’s covered and easily accessible in one part of the country might be difficult or impossible to access in another.

That’s why on Rare Disease Day, Feb. 28, Cystic Fibrosis Canada is calling attention to the geographic divide in access to medication confronting people with cystic fibrosis and other rare diseases, who face many of the same problems.

“Rare Disease Day is about uniting all the groups in the rare disease community and finding a way to improve policy,” Eric Mariglia, government relations and advocacy coordinator at Cystic Fibrosis Canada, told Cystic Fibrosis News Today by phone from Toronto.

Coverage of the many medications that cystic fibrosis patients use day-to-day to manage their disease, from antibiotics to supplements, varies widely across the country. When a new pharmaceutical is approved in Canada, Mariglia said, each province decides if it will cover it entirely, cover it only under certain criteria, or not reimburse for its use at all.

“One province may feel that it’s necessary to pay for it,” he said. “Another may be focused more on budget cuts.”

It’s frustrating, Mariglia said, that some patients are cut off from access to therapies that can help manage their symptoms simply because of where they live. “If you’re Canadian,” he said, “you should have equal access to the medications you need to get through your day.”

Cystic Fibrosis Canada is focused on developing relationships with provincial and federal government officials to push for change in the management of drug coverage, Mariglia said. “We need to let them know that the way our system is built right now, there is inequity.”

The organization is also pushing for coverage of newer and more expensive treatments, like Orkambi (lumacaftor/ivacaftor; marketed by Vertex Pharmaceuticals), that can address the causes of the disease rather than just treat its symptoms.

“This drug is really a life changer for a number of people with cystic fibrosis, but it has a really large price tag,” said Phil Norris, senior manager of corporate communications at Cystic Fibrosis Canada. “Supplements should be covered, but they’re a lot more accessible to someone outside of insurance than Orkambi.”

Provinces look to assessments made at the federal level when determining their reimbursement policies. The problem, Mariglia said, is that the centralized assessments are primarily aimed at establishing whether a medication is cost-effective. Those for rare diseases, which are expensive and of relevance to only a small population of patients, often aren’t.

“The provinces see this assessment, and use it to say it’s recommended not to reimburse the drug,” Mariglia said.

Cystic Fibrosis Canada hopes that the fight for equal access to medications across provinces — as well as for policies that better address new and costly treatments for rare conditions — will benefit both cystic fibrosis patients and the entire rare disease community.

“We’re taking a step further, beyond cystic fibrosis,” Mariglia said. “It’s about finding a way to improve the system.”

A Conversation With Rare Disease Advocates

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