Neocate formula's $900/month tab should be covered, says Calgary mom
Colleen Underwood | CBC News | Posted: October 22, 2015 11:00 AM | Last Updated: October 22, 2015
Denise Campbell says costs for son's prescription is running her into debt
Denise Campbell shakes up a bottle of formula to give to her son, Liam, for a mid-afternoon snack.
The 18-month-old makes all the typical happy noises you would expect as he fills his tummy — a relief for Campbell who says she almost lost him early on when he suffered a brain injury as an infant.
"For two weeks we were in the ICU at the children's hospital and we didn't know if he was going to live or die," said Campbell.
"He's my little miracle who has done remarkably well considering everything he's already gone through in his short little lifetime."
The brain injury left Liam with epilepsy and a mild form of cerebral palsy.
Around the same time, he was diagnosed with a milk allergy and put on a soy-based formula.
Campbell says it worked fine until just a few months ago when Liam started having breathing problems and dark circles began appearing under his eyes.
Hypoallergenic formula
The doctor did some blood work and said Liam now had a severe soy allergy. He prescribed Neocate, a hypoallergenic formula, which costs Campbell just over $900 a month.
"I was flabbergasted when I first saw what the cost was, and originally was told, 'Oh, don't worry, it should be covered if you get your doctor to special authorize it'."
Campbell's claim through her work's insurance company, Alberta Blue Cross, was denied because they said it wasn't covered by her plan and it was considered a nutritional supplement.
Campbell then turned to the Family Support for Children with Disabilities (FSCD), a department within the Alberta government, but again her claim was denied.
I was going in debt, borrowing just to keep going, but now we are running to the limit. - Denise Campbell
"I was told that unless it's directly related to his disability it would not be covered as an allergy under their program," said Campbell.
From there, she turned to Alberta Child Health Benefit, a provincial program that helps pay health bills for those on limited incomes, but she was told she makes too much money. She's a social worker with Alberta Health.
The single mom says after deductions, she brings home about $4,200 a month. She's finding it hard to pay the rest of her bills, including a mortgage, between Liam's live-in caregiver — which costs $2,700 each month — and the formula.
"I was going in debt, borrowing just to keep going, but now we are running to the limit. We're running out of options and so, at the moment, I've taken a little bit of time off work to figure out what my next option will be," said Campbell.
Edmonton mother in similar predicament
Lisa Caskenette knows this story all too well. Three years ago, the Edmonton mother was in a similar predicament trying to get help from Alberta Blue Cross to cover the cost of her son's prescription of Neocate.
Isaac suffered from necrotizing enterocolitis, an intestinal disease, that makes it impossible to digest dairy products. In the end, she won her appeal, and now she's helping other families do the same.
"Their child is really sick they don't have time to fight for this, not everyone has a big mouth like I do," said Caskenette. "I want to fight so that no parent has to go through what we had to go through."
"Their child is really sick they don't have time to fight for this, not everyone has a big mouth like I do," said Caskenette. "I want to fight so that no parent has to go through what we had to go through."
Caskenette is also petitioning the province to change the legislation to ensure that Neocate is covered for all families who require it, whether they are low income or not.
Campbell says it just makes sense.
"What are you telling me — I have to quit my job, go on social services, in order for my son to be able to get the nutritional supplements that he needs covered? Or, if I choose to keep working, I am going to end up in bankruptcy," she said.
"This is an exceptional circumstance, exceptional expenses, and how many families out there can afford $900 to $1,200 per month for formula for their child even if they are in a higher income bracket."
Alberta Health says Minister Sarah Hoffman will be following up with the department to get more information about the policies and what is done in other provinces.