Sask. family denied health-care funding for son’s lifesaving treatment

Over the past year, the Finns have gone through a lot — their four-year-old son diagnosed with a debilitating and potentially fatal disease, the race to get him treated, and now the Saskatchewan government refusing to help with the medical bills of close to $1 million.

Last June, four-year-old Conner Finn was diagnosed with Adrenoleukodrystrophy (ALD).

“I don’t recall a time in my life I’ve ever been more terrified. This is a disease that will rob your child of their sight and their hearing, they will not be able to eat, to walk, to communicate. And the end result is a very slow and painful death for the child,” explained his mother, Kirsten.

She said getting that diagnosis and thinking there might not be anything they could do to save their son was devastating.

At that point Conner wasn’t exhibiting any neurological symptoms but the Saskatoon family had to move quickly to keep it that way.

Kirsten explained the disease is rare in Canada and therefore there aren’t any specialists with real expertise in treating it.

Andrew McFadyen from the Isaac Foundation is helping the Finns. He said the Finns could have gone to Toronto but they very likely would have been referred to a centre in Minnesota.

So, with time being an important factor, the Finns went right to Minnesota. Kirsten said the medical team in Saskatchewan told them they did the right thing.

“We tried to access whatever care we could here but simply the timelines could not be accommodated and there is no experience with ALD,” explained Kirsten.

Just over two months after his diagnosis, Conner was in Minnesota getting a bone marrow transplant.

Now he’s doing well. Kirsten said the result has been amazing, the best they could have possibly hoped for.

The treatment seems to have arrested the progression of the neurological effects, but Conner will still be dependent on steroids for the rest of his life and Kirsten said he does have an area of damage to the coating around nerves in his brain.

“But because he was able to be treated where he was, our son still has maximum neurologic function and will be able to lead a relatively normal life,” said Kirsten.

The Finns had to pay for the treatment ahead of time, to the tune of more than $1 million — though they are expecting to get a small portion of that back from the centre. Kirsten and Craig, Conner’s father, liquidated their retirement savings to pay for it.

“Any parent would do exactly the same thing. You know, you put a second mortgage on your house, you liquidate your savings, you do everything you can to save your child,” said Craig.

“When we were faced with that situation for Conner, I would have sold my soul to get him that treatment. If I never see a dime of our retirement money back, we made the right call for our son,” said Kirsten.

When a resident needs health care and can’t access it in Saskatchewan, the province can — and often will — pay for them to access it in another province or another country. But the Province of Saskatchewan is refusing to help pay for Conner’s treatment.

The Finns have been denied help three times from the provincial government, first when they were preparing for the treatment despite the advocacy of their doctor in Saskatchewan. Then the province denied them help again after the Health Services Review Committee recommended the province reconsider that decision. And then it happened a third time when the Finns tried to appeal directly to the Minister of Health.

The Finns feel their experience with the government has been frustrating. Kirsten said the minister refused to talk to their ALD specialist or even familiarize himself with the disease.

“There has been zero consideration from this government in terms of the proper treatment our son should have received. We feel in essence that we’ve been denied due process in every possible way and that our son’s rights have been, really, violated in this case,” said Kirsten.

In response to an inquiry about the Finns’ case, the Ministry of Health sent an email:

“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,” read the email.

The ministry said it can’t discuss specifics of any reviews from the Health Services Review Committee.

According to the ministry’s response, the committee is there to ensure that ministry legislation, policy and guidelines are followed, and that it’s not within the committee’s mandate to recommend whether the ministry should pay for an out-of-country health service.

“It is within their mandate to review government decisions to determine whether the Ministry of Health’s coverage decision was made in accordance with its legislation, policies and guidelines,” stated the response.

The Finns have made filed complaints with the Saskatchewan Human Rights Commission and with the Provincial Ombudsman.