‘I’m having to beg for medication for my daughter to live,’ mother of rare disease patient says

·2 min read

Morgan Buyaki, a 23-year-old woman from Nipawin, Sask., was recently diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA), a rare autoimmune disease that affects the white blood cells in her body.

“Any organ in your body that has white blood cells — which is everything, including your skin — has the possibility to be affected,” said Buyaki’s mother, April Mcivor.

“They swell and cut off blood supply. And once blood supply is cut off to the organ, it becomes necrotic and dies. Once that happens, there’s nothing you can do. There is no going back.”

Buyaki’s doctors have prescribed a biologic medication, NUCALA, which could help save her life.

Without treatment, the five-year survival rate for EGPA is about 25 per cent. With treatment, that rate more than doubles, and she could even go into remission. But the medication is expensive: she needs 300 milligrams per month, which would cost around $9,000.

The provincial government has only agreed to cover 100 milligrams a month, leaving Buyaki’s family to make up the $6,000 difference.

“I understand it takes a lot of money to research these drugs and to make them, but what’s the point of having a lifesaving drug if it’s not available to anybody except the very elite, very wealthy one per cent?” said Mcivor. “It’s totally useless if you can’t access it.”

Watching her daughter’s illness progress — as she struggles to sleep and breathe, and relies more and more on oxygen — Mcivor is afraid of how long it might take the government to approve the full dose.

“I am so worried as a parent that the government will approve it too late, when it’s already too late to save her life,” she said.

In the meantime, Mcivor said the family has set up a GoFundMe campaign, and may have to sell their house.

“I’m having to beg for medication for my daughter to live,” she said. “No parent should be put in that position.”

On Friday, Mcivor spoke about her daughter’s situation at a press conference with Saskatchewan NDP health critic Vicki Mowat. Buyaki had also hoped to be present, but was too ill to attend.

“Morgan’s family is facing prospects that no family should have to face in this province,” said Mowat. “Having to sell their possessions; having to sell their home. … No family should have to sell their home to be able to provide life-saving care for their children, especially in the birthplace of Medicare.”

Mowat said the NDP is calling on the government to expedite its decision and cover the full dose of Buyaki’s medication, “so that her family doesn’t have to sell their home in order for her not to have organ failure.”

Julia Peterson, Local Journalism Initiative Reporter, The StarPhoenix

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