Family who went to U.S. for son's medical procedure asks Sask. to reconsider funding treatment

Conner Finn has adrenoleukodystrophy a rare neurological disease that required a bone marrow transplant in order to save his life but even though his family lived in Saskatchewan, he needed to go to Minnesota for treatment.

After draining their retirement savings and moving to the United States, the Finn family is calling for changes in Saskatchewan's medical system for their son and others like him.

"Growing up in this country and being an [emergency room] nurse, I was so proud to be from Canada and I just never anticipated a situation where I would have to leave the country to treat my son and that we'd be abandoned in that way," Conner's mother Kirsten Finn said on Monday.

Adrenoleukodystrophy requires aggressive treatment within a specific window. Making the financial sacrifices needed some $832,000 and relocating to the United States to ensure Conner got the best didn't even require a second thought, Kirsten said.

She and her family were asking the provincial government to recoup her family of the costs they had paid for Conner's treatment because it was a procedure that wasn't available in Canada.

The provincial government in Saskatchewan, in some cases, has covered costs for procedures that can't be done in Canada, said family advocate Andrew McFadyen.

Kirsten also asked the minister of health to explain himself as to why Conner's treatment wasn't covered, something she said was never properly disclosed to the family.

The family, she said, went as far as asking the Health Services Review Committee to examine Conner's case.

That review committee recommended the ministry of health "reconsider their original decision," though she said the ministry of healthnever did.

Kirsten said the family hadfiled human rights complaints and asked the ombudsman to investigate the matter.

The family also filed access to information requests to find out why their son's treatment wasn't covered but those requests were delayed for about six months.

Care unlikely in Canada: Meili

Saskatchewan Opposition Leader Ryan Meili acknowledged the care Conner would have needed would have been unlikely to be found anywhere in Canada.

He called on the government to look into the level of service provided within the Jim Pattison Children's Hospital and ensure the full scope of services the hospital intends to provide is being met.

Though at a higher level, he suggested better pre-birth screening measures, something he said would aid children born with rare diseases like Conner's.

Health Minister Paul Merriman spoke about Conner's case on Monday in question period and when questioned by reporters in the legislature's rotunda.

He committed to meeting with Conner's family on Monday afternoon and said numerous correspondence occurred between his office and the family about Conner's case.

Merriman explained if there was some opportunity to get surgical procedures done in Canada, the ministry prefers to take those avenues instead of looking out of country.

He said from his understanding of the matter, there were two conflicting opinions from physicians about whether or not Conner could have sought treatment in another jurisdiction like the United States.

Merriman said he was given information about the case and treatments from a clinical advisory group who suggested out-of-province treatment for Conner.

While in the past the provincial government has paid for medical procedures conducted outside of Canada, each case needed to be taken on its merits, Merriman said.

Conner's case was "extremely compelling" to Merriman, who said he had agreed to sit down with the Finn family and review their case.

"When it's somebody's little child, I understand, and I've said this before, as a parent, you want to do whatever you can for your child," Merriman said.

"In saying that, there are options out there that we have to look at within our own system and the Canadian system first."

McFadyen, the family advocate, said he looked forward to meeting with Merriman and discussing the matter further in person on Monday afternoon.

He said the Finn family has had a long, challenging year-and-a-half in dealing with Conner's diagnoses and treatments.

"Every day this drags on is heartbreaking and devastating and so I hope that Minister Merriman and indeed the premier can find it in themselves to find some resolution ASAP," McFadyen said.