Oshawa mom pleads with government for baby formula funding

An Oshawa mother is begging the government for help after it stopped covering an expensive prescription formula her son needs to keep thriving.

Steven Gangel-Balsdon is just 14-months old and is allergic to cow’s milk. He also can’t tolerate soy milk and has bad acid reflux. He has been in and out of the hospital since he was born. Things only got better when he started taking a special amino acid-based formula called Neocate.

“It was like my kid did a 360,” Andrea Gangel said. “He was happy. Calmer. He wasn’t in pain.”

Neocate costs up to $68 per can. Steven is currently going through almost one can a day just to maintain his weight.

Gangel said she applied for government coverage for Neocate when Steven was an infant. She was approved under the Ontario Trillium Benefit program. However, when Steven turned one, she was notified he no longer qualifies for coverage because he’s also on some solid foods.

“He’s underweight, he needs it to grow. It’s 50 per cent of his nutrition,” Gangel said.

 

Gangel and his pediatrician both disagree, saying he’ll need to be on it likely until he’s two years old in order to keep gaining weight.

Pediatricians say the government funding cut-off is problematic because while most babies develop a tolerance to cow’s milk eventually, it’s rare for it to happen by 12 months.

Another family won fight for coverage

Last year, another couple in Burlington successively petitioned the government to pay for Neocate after an 18-month battle. However, it was only after they were able to prove that the twin babies were not only allergic to cow milk but depended on the formula for survival.

“It’s a horrible feeling because 18 months was a long way to go putting that out of pocket,” said Jamie Barrette. “We had a discussion about moving back in with our parents because you can’t afford it. No one can afford that.”

Barrette also said all the forms, paperwork and notes they had to compile for their case was excessive.

“There’s times you just sit there at nighttime being like, ‘Oh, no, we need another can. How are we going to do this?'”

Increasing problem, says pediatrician

Pediatrician Dr. Sean Godfrey says an allergy to cow’s milk is more common than you may think.

“It does involve somewhere in the order of 10-to-15 per cent of all babies,” Dr. Godfrey said. “A surprisingly big number. True cow’s milk allergy, where you can prove it and define it, about half that, about 7 per cent. But we know it’s a surprising big number of babies that are affected one way or another by cow’s milk protein.”

He says that means five to 10 per cent of parents will end up needing to buy something like Neocate for their children.

“In fact, as doctors and caregivers are getting more informed and more aware of this, I think in fact it’s actually going to get higher because instead of trying the sort of half-way measures like partially-hydrolyzed, I think physicians particularly are becoming more acutely aware of the fact that you really should be going to the amino-acid formulas first.”

Province’s response

The Ministry of Health sent CityNews a statement Wednesday afternoon, saying, “Ontario provides coverage for many nutrition products, including infant formulas, through the Ontario Drug Benefit (ODB) program, according to criteria, for ODB-eligible patients… Nutrition products are eligible for coverage under the ODB program only when prescribed by a physician as the patient’s sole source of nutrition. There are no age restrictions.”