REGINA - Today Official Opposition Leader Ryan Meili was joined by Kirsten Finn, mother of Conner Finn, and Andrew McFadyen, Executive Director of the Isaac Foundation to call on the Sask. Party government to immediately reimburse the costs of Conner’s life-saving bone marrow transplant as recommended by the Health Services Review Committee but overridden by the Minister’s office. The Official Opposition is also calling on the Sask. Party government to expand prenatal screening to better detect rare diseases before they progress.
“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 Meili. “This government is forcing Saskatchewan families into impossible situations. No family in Saskatchewan should be forced to go near-bankrupt, needing to leave the province or country, all because the Minister of Health feels that he somehow knows better than the medical experts. Families like the Finns deserve so much better.”
5-year-old Conner Finn required an urgent life-saving bone marrow transplant after being diagnosed with a very rare and devastating neurological condition called Adrenoleukodystrophy (ALD). After Conner was diagnosed with ALD in June 2020, the Finn family was told by the Saskatchewan Health Authority that the ALD Center of Excellence in Minnesota gave Conner his best chance for survival and a disability-free outcome. Despite Conner’s Saskatchewan-based 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.
Since the Official Opposition raised the issue back in May, the Finns have had to put their retirement plans on hold, sell their house, and move to Kansas City to alleviate the financial hardship caused by the decision not to cover Conner’s care. Dr. Lund, the Minnesota specialist who provided Conner’s care, has offered multiple times to talk with Minister Merriman about Conner’s case in order to highlight the urgency he faced, how catastrophic any delays could have been on his prognosis, and to provide more insight into why this transplant could not have taken place in Canada, yet the Minister has refused to speak with the expert on multiple occasions.
“The Minister of Health has refused to speak with Dr. Lund on this matter. He is the world’s leading expert in this disease, so I can’t understand why Mr. Merriman wouldn’t want to seek that guidance. The people of Saskatchewan deserve to have a Minister of Health who will consult the experts on extraordinary cases like this, and they deserve a government that is transparent about decisions they are making,” said McFadyen. “I implore the government to do the right thing here and immediately approve reimbursement for Conner’s treatment. No government should pick and choose who gets to live and who must fight for life, and no family should ever have to bankrupt themselves in order to get the life-saving care they need.”
“The province has covered similar costs at the exact same facility in Minnesota and with the exact same doctor in the past. I really don’t understand why the Minister of Health refuses to even accept a phone call from Conner’s doctor to explain why his case was no different,” said Kirsten Finn. “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.”
The Official Opposition is calling for: - The immediate reimbursement of the Finn family for the private costs associated with Conner Finn’s treatment. - The immediate release of documents pertaining to Conner Finn’s care that have been withheld to date from the family by the Ministry of Health. - That prenatal screening in Saskatchewan to be expanded to better detect rare diseases like ALD.
Additional press release can be found here.
For more information please contact: Brock Bowman - Director of Communications 306-519-9549