Sask. NDP calls on provincial government to cover cost of medication for young woman with rare disease

The Saskatchewan NDP has joined the family of a young woman with a deadly rare disease in calling on the government to cover her treatment. 

Morgan Buyaki was supposed to meet with the media Friday at an event in Saskatoon, but the 23-year-old was too sick to make the journey from where she lives in Nipawin. This is typical for her, as she is mostly bedridden. 

Eighteen months ago, Buyaki was diagnosed with an extremely rare vascular disease called eosinophilic granulomatosis with polyangiitis (EGPA). 

The illness attacks her white blood cells, causing serious issues with her liver, kidneys, heart and more. She struggles to breathe, and has to always be on oxygen. 

There is a potential treatment for EGPA. A medication called NUCALA, or mepolizumab, has been shown to have positive effects for many, although further studies are still being done to fully understand its efficacy and optimal use.

For the treatment, Buyaki would need an injection of 300 mg once a month, according to Buyaki's mother April McIvor, but McIvor said that injection can cost up to $9,000 per treatment.

That price tag is simply not affordable for Buyaki's family. As of 3 p.m. CST Friday, a GoFundMe for Buyaki had raised nearly $15,000 of a $200,000 goal. 

NUCALA is on the list of drugs the Saskatchewan government will cover, but the required dose to treat EGPA is 300 mg per month, and McIvor said the government will only cover 100 mg. 

McIvor made the trip to Saskatoon without Buyaki on Friday. There, McIvor spoke alongside NDP health critic Vicki Mowat. Together, they're calling on the provincial government to help save her daughter's life. 

"It shouldn't be that every time a family is dealing with a rare disease, they have to come in front of the media, they have to come to the legislature, they have to approach their MLAs to be able to get coverage for these things," Mowat said. 

Mowat said the province needs to move quickly to cover all three of Buyaki's monthly doses. 

McIvor said she feels like her government is letting her family down. 

"I find it very ironic that this is happening in Saskatchewan. On Nov. 17, 1961, the Sask. Medical Care Insurance Act was passed, and it paved the way for all of Canada to have health insurance. And now, decades later, I'm standing in the same province and I'm having to beg for medication for my daughter to live," McIvor said. 

Buyaki is currently on 100 mg of NUCALA , along with eight other prescription medications.

According to Medscape, without treatment the five-year survival rate for EGPA is about 25 per cent. With treatment, the one-year survival rate is 90 per cent and the five-year survival rate is 62 per cent. 

"Without access to all three doses in one month, Morgan's family is facing the prospects that no family should have to face in this province. And that is having to sell their possessions, having to sell their home," Mowat said. 

"Without access to this medication, the outlook for Morgan is very bleak. So when we say life-saving medication, we're not using those words lightly."

CBC News asked the Ministry of Health if it would cover Buyaki's entire treatment, but it said it could not comment on a specific individual's situation due to privacy.

The ministry restated that NUCALA is an eligible benefit under Exception Drug Status. It said that "100 mg every four weeks is the Health Canada approved dose for severe eosinophilic asthma."

However, Buyaki's doctors and specialists have instructed her to take 300 mg to best treat the many facets of her disease.