A family who went to the United States to seek a bone-marrow transplant for their son will be reimbursed by the Government of Saskatchewan. According to the family of Conner Finn, Minister of Health Paul Merriman met with them on Monday to inform them of the news. Merriman ordered a review of the case on Nov. 15. 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 Conners 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. According to Kristen, the Ministry of Health has agreed to cover “pretty much all of the expenses.” Merriman said the Ministry of Health will be considering ways to improve its process for such cases in the future. He said a rare disease strategy is being developed to help guide care for similar cases in the future. Kristen told media on Nov. 15 that 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. Kristen said she believes having Merriman speak with Dr. Lund was the turning point in the review. “It was unclear what they were basing their decision on in previous discussions,” she told CTV News. “When your child has a rare disease like ALD I think its important for there to be consultations with people with significant experience treating the disease.” She said the Finn family is very encouraged by the provinces commitment to forming the Rare Disease Strategy.
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