Neocate formula's $900/month tab should be covered, says Calgary mom

Denise Campbell shakes up a bottle of formula to giveto her son,Liam, for a mid-afternoon snack.

The 18-month-old makes all the typical happynoises you would expect as he fills his tummya relief for Campbell who says she almost lost him early on when he suffered a brain injury as an infant.

"For two weekswe 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 wellconsidering everything he'salreadygone through in his short littlelifetime."

The brain injury left Liam with epilepsy and a mild form of cerebral palsy.

Around the same time, he was diagnosedwith a milk allergy and puton a soy-based formula.

Campbell says it worked fineuntil just a few months ago when Liam started having breathing problems anddark circles began appearingunder his eyes.

Hypoallergenic formula

The doctor did some blood work andsaidLiam now had a severe soy allergy. Heprescribed Neocate, a hypoallergenic formula, whichcosts Campbell just over $900 amonth.

"I was flabbergastedwhen I first saw what the cost was, and originallywas told, 'Oh, don't worry,it should be covered if you get yourdoctor to special authorize it'."

• Edmonton family wins formula coverage fight

Campbell's claim through her work's insurance company, Alberta Blue Cross, was denied because they said it wasn't covered by herplan andit was considereda nutritional supplement.

Campbell then turned to theFamily Support for Children with Disabilities (FSCD), a departmentwithin the Alberta government, but again her claim was denied.

I was going in debt, borrowingjust to keep going, but now we are running to the limit.- Denise Campbell

"I was toldthat unless it's directly related to his disability it would not be covered as an allergyunder their program," said Campbell.

From there, she turned to Alberta Child Health Benefit, aprovincial program that helps pay health bills for those on limited incomes, but she was told she makes too much money. She'sa social worker with Alberta Health.

The single mom says after deductions, she brings home about $4,200 amonth. She's finding it hard to paytherest of her bills, including amortgage,between Liam's live-in caregiverwhich costs$2,700 eachmonthand the formula.

"I was going in debt, borrowingjust to keep going, but now we are running to the limit.We're runningoutof optionsand 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 ofNeocate.

Isaacsuffered from necrotizingenterocolitis, an intestinaldisease, 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."

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 meI 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, andhow many families out there can afford $900 to $1,200 per monthfor formula for their child even if they are in a higher income bracket."

Alberta Health says MinisterSarah Hoffmanwill be following up with the department to get more information about the policies and what is done in other provinces.