Sask. NDP call for funding of life-saving medicine for Nipawin woman

“It’s a biologic and it treats EGPA and it’s just a life changer for anyone who has it,” said McIvor.

“Without government support, this potentially life-saving treatment could cost the family upwards of $9,000 each month,” said NDP Health Critic Vicki Mowat. “And without it, Morgan’s survival rate is about 25 per cent. With treatment, it’s 90 per cent.”

Mowat was joined by Morgan’s family and the Isaac Foundation to call on the province to expedite coverage of the life-saving medication, NUCALA and to create the promised provincial rare disease strategy.

“Morgan’s condition is extremely rare and the government should cover the cost of her medication given it is an eligible benefit under Exception Drug Status and could save her life,” said Mowat.

According to Mowat, the government said it will only cover 100 mg of NUCALA despite the required 300 mg monthly dosage for Morgan.

“The last time I was in Saskatchewan advocating for the needs of rare disease patients, I received assurances a rare-disease policy would be implemented to ensure no patient would have to seek help from the media as opposed to their health care system,” said Andrew McFadyen, executive director of the Isaac Foundation. “I’m saddened that Morgan hasn’t benefited from the proposed new framework and that she’s had to plead publicly for access to a medication that could dramatically change her life.”

(Submitted Photo/April McIvor)

For McIvor, she said that in dealing with this fight, she’s taken Canada’s health care system for granted, wondering why only the wealthy and elite can afford life-saving medication in the country.

“I find it very ironic that this is happening in Saskatchewan. Saskatchewan is kind of the birthplace of the introduction of health coverage in Canada,” she said. “Now decades later, I’m standing in the same province and I’m having to beg for medication for my daughter to live. No parent should be put in that position.”

Mowat and the Sask. NDP is calling on the province to not only fund the medication for Morgan but establish a promised strategy for rare diseases.

Since the original story was published, northeastNOW has heard from the provincial government and GSK, the makers of NUCALA.

In a statement, GSK said that while they are unable to comment on specific patient details, they do from time to time receive requests for financial support.

“We know there are many patients with rare disorders living in Canada who are missing out on treatments that could save or significantly improve their lives,” the statement reads. “In fact, organizations such as CORD exist to provide a common voice to advocate for health policy and a health care system that works for those with rare disorders, for which there is a significant unmet need.”

The province said it could not comment on Morgan’s situation due to privacy matters and that NUCALA is an eligible benefit under Exception Drug Status in Saskatchewan.

“The individual or the prescriber may contact the Drug Plan directly if they have any further questions regarding the approval process or coverage. We strongly encourage any Saskatchewan resident with questions to make that contact.”

So far, a GoFundMe page for Morgan has raised over $14,000.

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derek.craddock@pattisonmedia.com

Twitter: @PA_Craddock

by Derek Craddock

Sask. NDP call for funding of life-saving medicine for Nipawin woman

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