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The Saskatoon family is stuck on a million dollar bill for their son’s treatment in the United States

A family from Saskatoon who went to the United States to receive life-saving treatment for their young son is struggling to make ends meet after having to pay nearly a million dollars in medical bills. The family is upset that the government is refusing to compensate them, even though the Saskatchewan Health Authority (SHA) recommended urgent treatment in the United States, five-year-old Conner Fein was diagnosed with a rare neurological condition called Adrenoleukodrystrophy (ALD), on June 16, 2020. ALD can lead to many other conditions, which can lead to permanent disability as well as death, usually within four to eight years. The family said Minnesota’s ALD Center of Excellence was recommended by SHA as Connor’s best bet for a chance to survive and get a disability-free result. Dr. Marisa Shard, a pediatrician who treated Connor in Saskatoon, wrote a letter to the Health Department stating that there is only a small time period for a bone marrow transplant or gene therapy to be most effective. “There is no center in Canada with the level of Minneapolis experience in implanting children with XALD, a procedure associated with a mortality rate of 20 percent,” reads the letter. Toronto-based Andrew McFadden, president of the Isaac Foundation, which provides support and support to families dealing with rare diseases, said the ministry had suggested that Connor had been treated in Winnipeg or in Toronto. “The problem is that Winnipeg or Toronto couldn’t meet his needs the way we would have seen success,” McFadden said. “And so I expect what would have happened was that this child would have been sent to Toronto and then that counsel could have taken him to Minnesota. By then, he said, the boy’s decline would have been“ catastrophic. ”Says Kirsten Finn, Connor’s mother , The government’s actions are devastating to the family. (Submitted by Kirsten Finn) The family, with the help of their medical team, contacted the ALD Center in Minnesota and were seen immediately. Given how advanced the disease was, it was decided that an urgent bone marrow transplant was needed. A match was found, and the surgery was successful on August 24. According to Connor’s mother, Kirsten, his recovery is better than they had hoped. “Since he was able to heal where he was, our son still has maximum neurological functions and will be able to lead a normal life Relatively speaking, while he is being monitored for adrenal adequacy and just to make sure his illness does not recur, “he said.” All kinds of roadblocks “at a news conference on Friday, Finn’s family said the government’s response was disappointing. Conner’s father, Craig Finn, said he called First by the government to get help after the family has traveled To Minnesota for testing. He said, “They threw all sorts of barriers, telling me that I couldn’t defend my child, and only the treating doctor in Saskatchewan could defend him.” Conner’s father, Craig Finn, says dealing with the government has been frustrating. (Provided by Kirsten Fenn) According to Finn, their Saskatchewan doctor did his best to defend the case, but was rejected. The family appealed the decision to the Health Services Review Committee, which recommended that the ministry review its decision to refuse Conor’s coverage of treatment. In September, they received a document from the ministry stating that it would contradict the review committee’s recommendation, and refused coverage. “Moreover, the Department of Health has refused even to speak to our ALD specialist, so we don’t know what advice they rely on and make that decision,” said Kirsten Finn. In an email to CBC, the Ministry of Health provided the following statement. “It is not the competence of the Health Services Review Committee to recommend whether the Ministry should pay for a health service outside the country. The Ministry of Health covers the costs of the doctor / hospital for treatment outside the country only in exceptional cases. Under certain circumstances and conditions. One of the basic requirements is that the services be Medically necessary and cannot be obtained within Canada. ” According to the Finns, the spouses’ retirement savings were liquidated to pay for treatment. “We have taken every possible measure to try to follow all policies and procedures in saving our son’s life, and we are in complete disbelief that here in Saskatchewan, the government can deny us access to life-saving treatments,” said Kirsten. “Their actions and our son’s case were simply devastating for our family.”

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