A Saskatoon family who traveled to the United States for life-saving treatment for their young son is struggling to make ends meet after paying nearly $ 1 million in medical bills.
The family is upset that the government refuses to reimburse them, even though the Saskatchewan Health Authority (SHA) has recommended emergency treatment in the United States.
Conner Finn, five, 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, usually within four to eight years.
The ALD Minnesota Center of Excellence was recommended by the SHA as the best bet for Connor to have a chance to survive and a disability-free outcome, the family said.
Dr. Marisa Chard, a pediatric specialist who treated Connor in Saskatoon, wrote a letter to the Department of Health saying there was only a small window of time for a bone marrow transplant or therapy gene is the most efficient. The letter said, “There is no center in Canada with Minneapolis level of experience in transplanting children with XALD, a procedure that is associated with a death rate of up to 20 percent.”
Toronto-based Andrew McFadyen, chairman of the Isaac Foundation, which advocates and supports families struggling with rare diseases, said the ministry had suggested Connor could have been treated in Winnipeg or Toronto.
“The problem is, either Winnipeg or Toronto just couldn’t have met their needs as we would have successfully seen,” said McFadyen. “And so I predict what would have happened was that this child would have been sent to Toronto and this consultation would have taken him to Minnesota.”
By then, he said, the boy’s decline could have been “catastrophic.”
The family, with the help of their medical team, contacted the ALD Center in Minnesota and were seen immediately. Due to the progress of the disease, it was decided that an urgent bone marrow transplant was needed.
In less than a month, a match was found and the successful operation took place on August 24.
According to Conner’s mother, Kirsten, his recovery is better than they could have hoped for.
“Because he was able to be cared for where he was, our son still has peak neurological function and will be able to live a relatively normal life, while being monitored for his adrenaline sufficiency and just to make sure he doesn’t. ‘there is no recurrence of his disease “mentioned.
“All kinds of roadblocks”
At a press conference on Friday, the Finn family said the government’s response had been frustrating.
Craig Finn, Conner’s father, said he first contacted the government for help after the family traveled to Minnesota for testing.
“They threw up all kinds of roadblocks, told me I couldn’t defend my child, that only the attending physician in Saskatchewan could defend,” he said.
According to Finn, their Saskatchewan doctor did their best to make the case, but it was dismissed.
The family appealed the decision to the Health Services Review Committee, which recommended that the ministry reconsider its decision to deny coverage for Conner’s treatment.
In September, they received a document from the ministry saying it would go against the review committee’s recommendation, declining coverage.
“Further, the Department of Health refused to speak to our ALD specialist, so we don’t know what advice they are relying on and making this decision,” Kirsten Finn said.
In an email to CBC, the Department of Health made the following statement.
“It is not for the Health Services Review Committee to recommend whether the ministry should pay for an overseas health service.” The Ministry of Health only covers medical / hospital costs for treatment abroad in exceptional cases. under certain circumstances and under certain conditions. A key requirement is that the services are medically necessary and cannot be obtained in Canada. “
According to the Finns, the couple’s retirement savings were liquidated to pay for the treatment.
“We have taken every possible step to try to follow all policies and procedures to save our son’s life, and we are absolutely in disbelief that here in Saskatchewan the government can deny us access to life-saving treatments,” said Finnish Kirsten.
“Their actions and the case of our son were simply devastating to our family.”