Sask. Party government denies coverage for Sask. family’s fight against rare disease

REGINA – Today, Official Opposition Critic for Health Vicki Mowat joined Craig and Kirsten Finn and the Isaac Foundation’s Executive Director Andrew McFadyen to call on Premier Scott Moe to provide coverage for 4-year-old Conner Finn’s out-of-province care that limited the progression of his potentially fatal, debilitating rare disease.

“Any family in Saskatchewan would have taken the advice of experts and done what the Finns did for their son Conner. This family did everything in their power to save their son’s life. This government has been offered ample opportunities to get this right. They need to listen to the recommendation of the Health Services Review Committee that sided with the family,” said Mowat. “How on earth could you deny life-saving coverage, three times, for a rare disease that could not be treated here in Canada?”

After Conner was diagnosed with Adrenoleukodrystrophy (ALD) in June 2020, the Finn family was told by the Saskatchewan Health Authority the ALD Center of Excellence in Minnesota gave Conner his best chance for survival and a disability free outcome. Despite Conner’s Metabolic Physician also urging the Ministry to cover his treatment in Minnesota given “the small window of time in which a bone marrow transplant or gene therapy could be effective” and the lack of expertise in ALD in Canada, the Ministry denied the family coverage. The family appealed this decision with the Health Services Review Committee (HRSC), which recommended the Ministry review their decision to deny Conner coverage. Instead, the Ministry broke common practice by failing to accept the committee’s findings. Specialists in Minnesota were able to locate a donor and Conner was able to undergo the crucial bone marrow transplant surgery. Conner is back in Saskatchewan and has made a full recovery, thanks to the persistence and advocacy of his parents, who used their retirement savings to pay for Conner’s treatment and are now being refused any reimbursement for his life-saving care.

"We want Premier Moe to tell us why our child’s life was any less valuable. We were told to roll the dice with our son’s life and well-being,” said Kirsten Finn, Conner’s mother. “We want to know why the Province of Saskatchewan can ignore the plight of an innocent four-year-old boy, because palliative care is cheaper than treatment."

“No family should have to pay to save their child from any life threatening condition in this country - even if they have to go out of country to do so,” said Andrew McFadyen, President of the Isaac Foundation, a non-profit organization dedicated to helping families impacted by rare diseases navigate the health system.

Conner’s family has filed a complaint with the Saskatchewan Human Rights Commission and the Provincial Ombudsman. The Official Opposition is calling on Premier Moe to reverse the decision of his Health Minister and work with the family to cover the costs the Finns shouldered for the life-saving treatment for their son.

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