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Local PAH sufferer could soon get her wish

A North Gower woman, living with pulmonary arterial-hypertension, has been advocating to see a treatment become publicly funded in Ontario.
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2018-04-13 Pulmonary Hypertension Association of Canada
Pulmonary Hypertension Association of Canada logo.

Ontarians suffering with pulmonary arterial-hypertension should soon have access to a treatment which is expected to improve their quality of life.

Jane Sernoskie, 27, of North Gower Township is a kindergarten teacher who was diagnosed with PAH in the fall of 2016. 

She used to be a hockey player before she started experiencing shortness of breath doing small tasks like going up a flight of stairs, carrying groceries or putting on a pair of boots. Sernoskie said every PAH sufferer experiences the disease differently; some people deal with light-headedness, faint and can have weird heart palpitations. 

She explained that pulmonary arterial-hypertension is a progressive illness that can kill a person within two to five years. Sernoskie considers herself lucky as she has been able to qualify for an Ontario exceptional access program, which has allowed her to be able to take a medication called Uptravi, which can cost $50,000 per year out of pocket.

The 27-year-old said it slows down the disease.

"This Uptravi treatment has kept me stable," said Sernoskie. "A lot of people who don't have this treatment have to quit work, move into subsidized housing because they don't have the income and disability is not the greatest option. I'm able to work, I got married, I have a dog. So this drug has given me life again."

Sernoskie has been advocating to see Uptravi publicly funded in Ontario, as has been the case in Quebec for the last few months. 

The Pulmonary Hypertension Association of Canada said it was recently approved to be publicly funded in Newfoundland and is expected to be made available in Manitoba next week.

Executive Director Jamie Myrah is hopeful the treatment will be made available across Canada, believes it will be publicly funded in Ontario within weeks.

"The process is in place, and provinces are doing what's necessary now that pricing negotiations have been completed at a national level," she said. "Each province is doing the work necessary to ensure that this treatment option will be available to the people in need."

Myrah explained that Uptravi is not the newest form of PAH treatment, but what makes it important  is that it's the first time an oral therapy has been available in one particular pathway instead of patients having to regularly take intravenous.

There are between 5,000 and 10,000 pulmonary arterial-hypertension sufferers in Canada.




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