Morgan Buyaki is in need of a life-saving treatment not covered by the government. (GoFundMe)

By Derek Craddock

LIFE SAVING TREATMENT

‘It’s unattainable’: Nipawin mother pleads for help to fund life-saving drug for her daughter

Jul 6, 2022 | 5:00 PM

Imagine being told there was a drug that could save your child’s life, the only problem is, you can’t afford it in Canada.

That is just part of the heartbreak for Nipawin mother April McIvor as she is pleading for help to pay for a pharmaceutical drug to treat a rare condition.

April’s 23-year-old daughter Morgan suffers from eosinophilic granulomatosis with polyangiitis (EGPA), an extremely rare form of vasculitis which causes inflammation of small blood vessels. This inflammation inevitably restricts the blood flow to vital organs.

Though she has had it most of her life, doctors were not able to diagnose it until a couple of years ago.

“Basically, when blood supply is cut off, you start having all kinds of problems (and) your organs start to die,” said April, who spoke to northeastNOW about the condition and their fight to receive the drug that is out of their reach.

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“Nucala is the first drug that works for EGPA and it was only approved for use in Canada about five years ago. It’s virtually impossible unless you’re a millionaire. We looked at everything from selling everything we own and our house and it’s just not doable and not something an average family can do.”

Morgan’s specialists have researched whether any substitute drug could work but have found that because of the severity of her condition, Nucala is the only one that can work.

The drug is manufactured by GlaxoSmithKline (GSK) a British Pharmaceutical company that manufactures a variety of prescription medications, vaccines, and over-the-counter medicines.

Earlier this year, the company along with Quebec-based Medicago developed a plant-based COVID-19 vaccine COVIFENZ.

As of the latest quarterly report in March 2022, the company posted revenue of $13.1 Billion USD and in all of 2021, they boasted revenue of nearly $47 Billion USD.)

For McIvor, it’s hard for her to look at those numbers when a 100ml dose costs anywhere from $2,400 to $3,100 each.

“The pharmaceutical giant, they’re raking in trillions in a year, and to have a drug that costs that much, it’s unattainable.”

She added the only real solution is to have the feds step up and help fund this drug.

“Every time you look at the T.V., they’re (federal government) spending a million or a trillion here for non-Canadians that they’re trying to improve their lives, and yet, here is a Canadian citizen that needs this to live, a young lady, and they won’t approve it.”

McIvor, her family, and her doctors have been pressing hard for a long time, to nearly every politician in the province and Canada to ask that they fund the Nucala treatment.

Morgan’s specialists have even applied to the government to fund the medication on the basis that it is vital for her treatment but were repeatedly denied.

The federal government did eventually agree to fund 100 ml of the treatment per month. That, however, leaves the family with nearly up to $6,000 a month still needed.

“She suffers. Her daily life is full of pain. She can’t breathe. To watch your child like that and to be told there is a medication but, I’m sorry, you don’t have enough money to purchase it for her so you just get to slowly watch her die is heartbreaking.”

A GoFundMe has also been set up to support the family and April said she’s grateful for the help they have received so far.

northeastNOW has reached out to the SaskParty government, Health Canada, and GSK for comment.

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derek.craddock@pattisonmedia.com

Twitter: @PA_Craddock