Saskatoon family being squeezed by treatment for son’s rare disease

A Saskatoon family says the Saskatchewan government is putting a price on their son’s life by denying coverage for a treatment keeping him alive.

Six-year-old Tanner Wilson has a rare mitochondrial condition known as Leigh’s disease.

The devastating condition breaks down the central nervous system affecting a person’s motor and speech skills.

“We already have the stress of Tanner’s regression, and then to throw the financial part of it on top of that is just huge,” said Tanner’s dad, Patrick.

“To have the government deny us coverage for a medication is almost criminal, if you ask me.”

Tanner was diagnosed in 2016, and his parents say doctors didn’t give much hope he would live longer than a few months.

Patrick and Leanne weren’t prepared to give up and found a doctor in Alberta who prescribed a cocktail of vitamins. The mito cocktail isn’t covered under the Saskatchewan Drug Plan, but his parents believe it should be.

They claim it has slowed the progression of the disease and extended Tanner’s life.

“Right now he’s limited to laying on the ground and rolling around a bit, but he’s a happy boy and he loves watching his cartoons,” said Patrick. “We try to keep him happy.”

With Tanner growing, he needs a larger dose of the vitamin cocktail, which is increasing the cost from $500 to $1,200 a month.

The Ministry of Health says only evidence-based medications are covered under the drug plan, which is in line with other provinces.

“It’s always a tough decision, there are therapies that people want covered; unfortunately we can’t cover everything, so we look at the evidence and make our determination based on that on a case-by-case basis,” the ministry said in a statement.

“Coverage is reviewed on a case-by-case basis to determine eligibility based on condition and the components of the cocktail. The physician is encouraged to make a request on the patient’s behalf in order for the drug plan to determine if a particular cocktail is covered.”

Tanner’s parents say they have done that, but to no avail. They are currently awaiting word on their their latest appeal after having been turned down twice.

“Without it being covered, it’s just financially crippling,” said Patrick.

The family is doing their part to educate people about the disease.

People can show their support by wearing green during Mitochondrial Awareness Week, Sept. 16-22. SaskTel Centre will be lit in green on Sept. 18.