“It is a very humbling experience to beg for my daughter’s life.”
That’s from April McIvor on a GoFundMe page set up to try to afford a life-saving treatment for her daughter’s rare disease.
McIvor’s daughter Morgan Buyaki has eosinophilic granulomatosis with polyangiitis (EGPA), a chronic rare disease that’s caused by inflammation in the walls of small to medium-sized blood vessels.
The disease can be life-threatening, but a monthly injection of Nucala could save the 23-year-old Nipawin, Sask., resident’s life.
McIvor said one injection of Nucala costs between $7,200 and $10,000.
“Her doctors have filled out the forms, and applied repeatedly, and finally they conceded to cover only 100mg of the 300mg she needs, and say we are responsible for the remaining 200mg. At a cost of $2,400- $3,200 per each 100mg, this is not possible and completely unaffordable. I don’t understand why the government is letting her die,” read the post.
Vicki Mowat with the Saskatchewan NDP held a press conference on this issue.
“Without access to this medication, the outlook for Morgan is very bleak. There’s about a 25 per cent survival chance without access to this medication, whereas with access to this medication it’s closer to 90 per cent.”
- Canadian man dies during Texas Ironman event. His widow wants answers as to why
- ‘Super lice’ are becoming more resistant to chemical shampoos. What to use instead
- Canadians more likely to eat food past best-before date. What are the risks?
- Treatment from female doctors leads to lower death rates, study finds
Mowat said no family should have to sell their home to save their children.
“We are calling on the government today to expedite this decision, to move quickly to cover three doses for Morgan so that she can start feeling better, so that she can have access to this life-saving medication.”
McIvor said at the conference she hit a wall with the drug company, GSK, as well as the government, and that’s why she is taking this issue to the public.
She also noted that other medications that cost around the same amount are fully covered by the government.
“You always hear stories from the U.S. or wherever that unfortunately because of health care, people have not been able to help a family member, or they’ve died, or they’ve had to sell everything. And you’ve always felt like, ‘Thank God in my country that doesn’t happen,’ so it was really a brutal fact to find that it does happen in this country, and it’s happened to my child.
“What’s the point of having a life-saving drug if it’s not available to anybody except the very elite, very wealthy, one per cent?” added McIvor.
Global News has reached out for government response, and this article will be updated when one is provided.
The following statement was received from GSK on Monday morning:
“Our purpose as a healthcare company is to get ahead of disease together and we aim to do so by providing patients and healthcare professionals with treatment options for a variety of diseases — this includes the rare disease Eosinophilic granulomatosis with polyangiitis, or EGPA.”
“Patients living with rare disorders such as EGPA count on us and that’s why GSK helps make NUCALA available for appropriate patients through a Patient Support Program (PSP), designed to support patients living with EGPA, and 3 other eosinophilic diseases, on their treatment journey through specialized services such reimbursement navigation, financial assistance, patient dose scheduling and monitoring, and adverse events.”
“A physician-initiated request for enrolment in the PSP is required. While we are unable to comment on any specific patient details, we have provided them with information about the PSP and the required steps for enrolment.”
Comments