A Saskatoon family who went to the United States for a life-saving treatment for their young son is struggling to make ends meet after having to pay almost $1 million in medical bills.
The family is upset the government is refusing to reimburse them, even though the Saskatchewan Health Authority (SHA) recommended the urgent treatment in the U.S.
Five-year-old Conner Finn was diagnosed with a rare neurological condition called Adrenoleukodrystrophy (ALD), on June 16, 2020. ALD can lead to several other conditions, which can result in permanent disability as well as death, typically within four to eight years.
The ALD Center of Excellence in Minnesota was recommended by the SHA as being the best bet for Connor to have a chance at surviving and a disability-free outcome, the family said.
Dr. Marisa Chard, a pediatric specialist who treated Connor in Saskatoon, wrote a letter to the Ministry of Health stating that there was just a small window of time for a bone marrow transplant or gene therapy to be most effective. The letter stated: "There is no center in Canada with Minneapolis's level of experience in transplanting children with XALD, a procedure that is associated with up to a 20 per cent mortality rate."
Toronto-based Andrew McFadyen, president of the Isaac Foundation, which provides advocacy and support for families coping with rare diseases, said the ministry has suggested Connor could have been treated in Winnipeg or in Toronto.
"The problem is Winnipeg or Toronto just couldn't have looked after his needs in the way that we would have seen success," McFadyen said. "And so I anticipate that what would have happened was this child would have been sent to Toronto and then that consult would have taken him to Minnesota."
By that time, he said, the boy's decline could have been "catastrophic".
The family, with help from their medical team, reached out to the ALD Centre in Minnesota and were seen immediately. Because of how advanced the disease was, it was decided that an urgent bone marrow transplant surgery was needed.
Within a month a match was found, and the successful surgery took place on Aug. 24.
According to Conner's mom, Kirsten, his recovery is better than they could have hoped for.
"Because he was able to be treated where he was, our son still has maximum neurological function and will be able to live a relatively normal life, while being monitored for adrenal sufficiency and just to make sure there's no recurrence of his disease," she said.
'All kinds of roadblocks'
At a press conference on Friday, the Finn family said that the government's response has been frustrating.
Craig Finn, Conner's father, said that he first contacted the government for help after the family had travelled to Minnesota for testing.
"They threw up all kinds of roadblocks, told me that I couldn't advocate for my child, that only the Saskatchewan treating doctor could advocate," he said.
According to Finn, their Saskatchewan doctor did their best to plead the case, but it was turned down.
The family appealed the decision with the Health Services Review Committee, which recommended that the ministry review their decision to deny Conner's treatment coverage.
In September, they received a document from the ministry that it would go against the review committee's recommendation, declining coverage.
"Further to that, the Ministry of Health has refused to even speak to our ALD specialist, so we don't know what advice they're relying on and making this decision," said Kirsten Finn.
In an email to CBC, the Ministry of Health offered the following statement.
"It is not within the mandate of the Health Services Review Committee to recommend whether the ministry should pay for an out-of-country health service. The Ministry of Health covers the physician/hospital costs for out-of-country treatment only in exceptional circumstances and under certain conditions. A key requirement is that the services are medically necessary and not obtainable within Canada."
According to the Finn's, the couple's retirement savings were liquidated to pay for the treatment.
"We took every course of action possible to try and follow all the policies and procedures in saving our son's life, and we're in absolute disbelief that here in Saskatchewan, the government could deny us access to life-saving treatments," said Kirsten Finn.
"Their actions and our son's case have simply been devastating to our family."