Mother of Sask. woman with rare disease begs for access to potentially lifesaving medication

"Hi. I am April and Morgan is my daughter. It is a very humbling experience to beg for my daughters life."

These are the opening lines of a lengthy post on a GoFundMe fundraiser for a 23-year-old girl from Nipawin, Sask.

The author is April McIvor, a mother who has had to watch her daughter suffer for years. But she says lately, it's been worse than ever.

Eighteen months ago, Morgan Buyaki was diagnosed with an extremely rare vascular disease called eosinophilic granulomatosis with polyangiitis (EGPA). According to the Cleveland Clinic, EGPA is so rare there are only two to five new cases a year per one million people. It is fatal if untreated.

Prior to the diagnosis, Buyaki battled chronic health issues for many years. Today, Buyaki has to use a walker and oxygen, frequently vomits and has issues with her liver, kidneys and heart. Beyond the pain is the struggle to breathe. This, her mother says, is the hardest part. 

"Even turning over in bed is a problem because she just can't breathe. She's basically drowning on land. It's like she's suffocating," McIvor said.

Even turning over in bed is a problem because she just can't breathe. She's basically drowning on land. It's like she's suffocating.- April McIvor

McIvor is with her daughter, who is nearly always bedridden, all the time. She said that she is often reminded of when Buyaki was a baby. 

"How every few hours they wake up to eat and you hear every little noise," she said, "I wake up multiple times during the night looking in on her to make sure she's still alive." 

McIvor describes Buyaki as an animal lover "to a fault," who raises funds for a senior dog shelter and often takes in strays. Buyaki also loves to journal and write, is a big Stephen King fan, and can make any story interesting with her "wicked sense of humour and sharp wit," said McIvor. 

The treatment and its cost

There is a potential treatment for EGPA, which attacks the body's white blood cells. 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 McIvor, but she said that injection costs between $5,600 and $9,000 per treatment.

"Who can afford that?" McIvor said.

McIvor said she's not just thinking of her own child. She said anyone could fall into similar circumstances.

"It could be somebody else's child or somebody else's mother who, for the same thing, could not afford a lifesaving medication. And I just don't think that in this day and age in this country, Canada — I just don't think it's acceptable. It shouldn't be like that."

As McIvor spoke about her daughter's condition, and how impossible it is for her family to afford the medication, she frequently broke into tears. She said she hates asking people for money because she knows most people are struggling with inflation right now.

I hate to use the word desperate, but that's kind of where I am.- April McIvor

"I hate to use the word desperate, but that's kind of where I am. And our economy has gotten really difficult for everybody, affording gas or groceries. I mean, every family is struggling."

As of late Thursday afternoon, the GoFundMe for Buyaki had raise just over $5,600 of the $200,000 goal.

Appeals to the government, manufacturer 

McIvor said she has reached out to multiple levels of government, as well as the pharmaceutical company that makes the drug, GSK. She has not received any personal response. She said Buyaki's doctors and specialists have applied for government help in gaining access to the drug, but have been denied.

CBC News reached out the Saskatchewan Ministry of Health for comment, and it said in a statement that it cannot comment on an individual's situation due to privacy.

"However, please note that NUCALA is an eligible benefit under Exception Drug Status (EDS) in Saskatchewan," read the statement.

The Ministry of Health said the individual or the prescriber "may contact the Drug Plan directly if they have any further questions regarding the approval process or coverage."

NUCALA is indeed on the list of drugs the 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. 

Buyaki has multiple specialists, including lung and gastro specialists. She has to have many tests done and racks up numerous hospital stays.

"And she has to have so much treatment surgeries," her mother said. "I mean, that is not cost effective, when they could give her a medication that could make her a productive member of society."

McIvor said she is appealing to the Saskatchewan and Canadian governments, as well as "people in positions of power to save her life." She is also appealing to GSK to help, whether it's with a medical trial or a grant.

"To know that there is treatment out there that works, that would save her life and that would give her her normal life. But I can't have access to it because I don't have enough money. It's such a feeling of hopelessness, like you're a failure."

McIvor said that when she asked her daughter what her wish was, Buyaki she just wanted to be healthy enough to work at Tim Hortons.