'Simply devastating': Saskatoon family calls on government to cover treatment for child with rare disease
SASKATOON -- A Saskatoon family is calling on the provincial government to reverse its decision and cover the cost of a rare medical treatment for their son.
Last summer, five-year-old Connor Finn was diagnosed with cerebral adrenoleukodystrophy (ALD), a rare and sometimes fatal disease that attacks the brain.
Conner’s mom, Kirsten Finn, said she was “terrified” and “beyond devastated” when she learned her son had ALD.
The positive news was Conner’s tests showed he was at an early stage of the disease and could be treated with a specialized stem cell transplant.
Doctors told the family the treatment would have to happen quickly to avoid the disease from developing further.
The family said with no ALD specialists in Canada, they turned to a doctor in Minnesota who knew the disease “backwards and forwards.”
When the Finn family requested out-of-country coverage, they said they were denied by the Saskatchewan government.
Then, they turned to the Health Service Review Committee, used to adjudicate claims. Each committee is made up of a doctor, lawyer and a representative of the public.
Given the urgency and no experts in Canada, the Finns said the committee recommended the Ministry of Health reconsider the claim.
“Unfortunately, the ministry decided to ignore that recommendation and still denied our claim a second time,” father Craig Finn said.
With no government funding, the family said they had to liquidate their retirement savings to cover the nearly $1 million treatment for their son.
“We’re in absolute disbelief that here in Saskatchewan, that the government could deny our son access to life saving treatments. Their action has been simply devastating to our family,” Kirsten Finn said.
In a statement to CTV News, the Ministry of Health said it only covers out-of-country treatment in “exceptional circumstances.”
The Ministry said a key requirement is that the medical treatment is “necessary and not obtainable within Canada,” but refused to discuss specifics of the Conner’s case.
The Finns said the few ALD cases in Canada often end up in Winnipeg or Toronto and doctors turn to the Minnesota facility.
“To ask us to undergo a bone marrow transplant in Canada, with a physician who has never done it before, we simply could not take that chance with our son’s life,” Kirsten Finn said.
The Finns' call for reimbursement is getting support from the NDP.
“The Ministry of Health shouldn't have to be dragged kicking and screaming to do the right thing,” NDP health critic Vicki Mowat said.
While the family is in debt to cover medical bills, the good news is the early intervention treatment in Minnesota worked — a rare outcome for this type of disease.
“He needed to be in Minnesota, there's absolutely no question in our mind that we did the right thing for our son,” Kirsten said.