Family who left Sask. for $1M life-saving procedure wants reimbursement from province

REGINA -

A family who went to the United States to seek a bone-marrow transplant for their son is asking to be reimbursed by the Government of Saskatchewan.

In June 2020, Conner Finn, 5, was diagnosed with cerebral adrenoleukodystrophy (ALD), a rare and sometimes fatal disease that attacks the membrane which insulates nerve cells in the brain.

The window of opportunity to treat the disease, which affects one in 18,000 people, was a narrow one and Saskatchewan did not offer the procedure that was Conner's best hope — a blood stem cell transplant.

According to Conner’s mother Kirsten Finn, after being denied coverage by the Saskatchewan Ministry of Health, the family appealed that decision to the Health Services Review Committee, which recommended the province cover the cost of the procedure. She said the office of the health minister overrode the recommendation.

Due to the urgent need for the procedure, the Saskatchewan Health Authority recommended the procedure be done by the ALD Center of Excellence in Minnesota.

The procedure came with a hefty price tag, around $1 million.

“The minister’s decision to ignore his Health Services Review Committee has completely changed our lives. We just want the minister and the premier to explain why our child’s life was less valuable than others,” said Finn.

Finn said Minister of Health Paul Merriman refused on several occasions to speak with Dr. Troy Lund, the Minnesota specialist who provided Conner’s care. Lund wanted to speak with Merriman to highlight the urgency of Conner’s case.

Merriman said Monday that there are stipulations in health policy that say if there’s an opportunity for an individual to receive treatment in Canada that they should do so.

The Government of Saskatchewan gave the Finns the option of having the transplant done in Winnipeg or Toronto, but did not provide a definite timeline or confirm if there was an ALD specialist to treat him.

Andrew McFadyen, executive director of the Isaac Foundation, is the family’s advocate.

“The minister chose to ignore that recommendation and move forward with his own decision. I can’t for the life of me figure out why they wouldn’t listen to a body created by themselves to provide objective guidance on these very types of situations,” McFayden said.

The blood stem cell transplant halts the degeneration in the body including brain deterioration which can cause hearing loss, losing the ability to walk and even death.

“This is once again a case of this Minister of Health ignoring expert recommendations causing lasting effects for Saskatchewan families. Why on earth would he ignore the recommendations of his own Health Services Review Committee? The Finns were just following the recommendations they received from the SHA to provide the best care for their child,” said NDP leader Ryan Meili

With files from CTV Saskatoon’s Carla Shynkaruk.