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.

Latest posts

KEVIN WEEDMARK REFUNDS TAXPAYERS FOR JOURNALISM GRANT HIS PAPER RECEIVED

KEVIN WEEDMARK REFUNDS TAXPAYERS FOR JOURNALISM GRANT HIS PAPER RECEIVED The Moosomin-Montmartre MLA Continues Hiding From Media As Questions Grow

REGINA – Today, more questions about embattled MLA Kevin Weedmark have been raised following the release of an article from Grasslands News about his privately owned and operated newspaper, The World Spectator.

BRIGHTON RESIDENTS LEFT IN THE DARK: CARLA BECK'S TEAM CALLS OUT MLA KEN CHEVELDAYOFF OVER PHANTOM SCHOOLS

SASKATOON— Carla Beck's team, joined by local Brighton resident Dr. Sarah Chomicki, is calling on Scott Moe to fulfill his government's broken promises and immediately get to work on a neighborhood school for the rapidly growing community of Brighton.

NEW DATA SHOWS THAT SASKATCHEWAN HAS THE HIGHEST CHILD FOOD BANK USAGE IN CANADA

Beck Commits To School Nutrition Program, Doing All She Can To End Child Poverty
REGINA – Carla Beck’s team is sounding the alarms on new data showing more children in Saskatchewan are forced to rely on the food bank than anywhere else in Canada.

CARLA BECK GOVERNMENT WOULD RESTORE DIRECT-TO-LANDLORD RENT PAYMENTS AS MOOSE JAW FACES RISING HOMELESSNESS

More Affordable Housing, Rent Control Also Part Of Plan Being Developed By Beck’s Team
MOOSE JAW – Carla Beck’s team is in Moose Jaw today committing that, should they form the next provincial government, her team will restore direct-to-landlord rent payments for Saskatchewan Income Support (SIS) and Saskatchewan Assured Income for Disability (SAID) clients.

NDP Caucus Office