Sask. to reimburse family who left province for $1M life-saving procedure
A family who went to the United States to seek a bone-marrow transplant for their son will be reimbursed by the Government of Saskatchewan.
According to the family of Conner Finn, Minister of Health Paul Merriman met with them on Monday to inform them of the news. Merriman ordered a review of the case on Nov. 15.
In June 2020, Conner Finn, 5, was diagnosed with cerebral adrenoleukodystrophy (ALD), a rare and sometimes fatal disease that attacks the membrane which insulates nerve cells in the brain.
The window of opportunity to treat the disease, which affects one in 18,000 people, was a narrow one and Saskatchewan did not offer the procedure that was Conner's best hope — a blood stem cell transplant.
According to Conner’s mother Kirsten Finn, after being denied coverage by the Saskatchewan Ministry of Health, the family appealed that decision to the Health Services Review Committee, which recommended the province cover the cost of the procedure. She said the office of the health minister overrode the recommendation.
Due to the urgent need for the procedure, the Saskatchewan Health Authority recommended the procedure be done by the ALD Center of Excellence in Minnesota.
The procedure came with a hefty price tag, around $1 million. According to Kristen, the Ministry of Health has agreed to cover “pretty much all of the expenses.”
Merriman said the Ministry of Health will be considering ways to improve its process for such cases in the future. He said a rare disease strategy is being developed to help guide care for similar cases in the future.
Kristen told media on Nov. 15 that Merriman refused on several occasions to speak with Dr. Troy Lund, the Minnesota specialist who provided Conner’s care. Lund wanted to speak with Merriman to highlight the urgency of Conner’s case.
Kristen said she believes having Merriman speak with Dr. Lund was the turning point in the review.
“It was unclear what they were basing their decision on in previous discussions,” she told CTV News. “When your child has a rare disease like ALD I think it's important for there to be consultations with people with significant experience treating the disease.”
She said the Finn family is very encouraged by the province's commitment to forming the Rare Disease Strategy.
CTVNews.ca Top Stories
'It could be catastrophic': Woman says natural supplement contained hidden painkiller drug
A Manitoba woman thought she found a miracle natural supplement, but said a hidden ingredient wreaked havoc on her health.
After hearing thousands of last words, this hospital chaplain has advice for the living
Hospital chaplain J.S. Park opens up about death, grief and hearing thousands of last words, and shares his advice for the living.
WHO likely to issue wider alert on contaminated cough syrup
The World Health Organization is likely to issue a wider warning about contaminated Johnson and Johnson-made children's cough syrup found in Nigeria last week, it said in an email.
WATCH Video shows dramatic police takedown of carjacking suspects chased through parking lot north of Toronto
Police have released video footage of a dramatic takedown of a group of teens wanted in connection with an attempted carjacking in Markham earlier this month.
Canada, G7 urge 'all parties' to de-escalate in growing Mideast conflict
Canada called for 'all parties' to de-escalate rising tensions in the Mideast following an apparent Israeli drone attack against Iran overnight.
'It was all my savings': Ontario woman loses $15K to fake Walmart job scam
A woman who recently moved to Canada from India was searching for a job when she got caught in an online job scam and lost $15,000.
Families to receive Canada Child Benefit payment on Friday
More money will land in the pockets of some Canadian families on Friday for the latest Canada Child Benefit installment.
After COVID, WHO defines disease spread 'through air'
The World Health Organization and around 500 experts have agreed for the first time on what it means for a disease to spread through the air, in a bid to avoid the confusion early in the COVID-19 pandemic that some scientists have said cost lives.
American millionaire Jonathan Lehrer denied bail after being charged with killing Canadian couple
American millionaire Jonathan Lehrer, one of two men charged in the killings of a Canadian couple in Dominica, has been denied bail.