Toronto

Why this mom is struggling to have her sick infant's formula covered by the province

Orono, Ont. parents are paying out of pocket for a formula their daughter needs because their insurance doesn't cover it and OHIP+ won't, either, because they have insurance

Seven-month old Adaline was born with Wolf-Hirschhorn Syndrome

Elysha Wilkinson with her daughter, Adaline, in the backyard of their home in Orono, Ont. (Lisa Xing/CBC)

An Ontario mother whose infant relies on a specific formula that costs $200 a week is in a difficult bind now that the government of Premier Doug Ford has rolled back the OHIP+ pharmacare program.

She's trying to get the costs covered by the province, because her private insurance won't cover it. But the province won't cover it, because she already has private health insurance. 

Elysha Wilkinson's seven-month old, Adaline, was born with a rare genetic disorder called Wolf-Hirschhorn syndrome, which affects her physical growth and intellectual development. 

"It was devastating. The life that you dream for your child ... It's really hard," said Wilkinson. 

Adaline Vanson can only keep the Puramino formula down. (Lisa Xing/CBC)

As a result of the disorder, her daughter has severe digestive and gastro-intestinal reflux issues and has been unable to keep anything down except for a formula called Puramino A+. 

"She was vomiting 24/7, almost every single feed. She was screaming," said Wilkinson. 

Aside from physiotherapy and cardiologist appointments, her parents have been worrying about the $200 a week price tag. Because they have private insurance, OHIP+ doesn't cover it. However, their private insurance won't pay for it, either. 

"It's not a choice. We're not choosing to put our daughter on this."

Adaline's pediatrician prescribed Puramino because the seven-month-old could not keep any other food down. (Lisa Xing/CBC)

This spring, Ontario rolled back a Liberal plan that covered all prescriptions for people under 25. The province will now only cover drug costs for people under 25 who don't have private health insurance. The move was projected to save $250 million. 

Natalie Mehra, president of the Ontario Health Coalition, said she was "shocked and appalled" by Wilkinson's situation.

"It makes no sense to have a public health system and get a diagnosis, but you can't afford the cure." 

While Mehra said this is the first she's heard of the situation, France Gelinas, the NDP's health critic and MPP for Nickel Belt, says she knows of several families who have similar problems. 

In April, the New Democrats questioned Ontario Health Minister Christine Elliott about the story of a Niagara Falls mother who was paying $600 a month for the same formula. Elliott said she would look into it. 

"Don't balance the budget on the shoulders of sick, newborn babies," said Gelinas. 

Elysha Wilkinson feeds her daughter, Adaline, a formula that costs about $200 a week. (Lisa Xing/CBC)

The Ministry of Health told CBC News families with high medication costs are eligible to be covered under the Trillium Drug Program. That involves paying an upfront deductible of four per cent of the household after-tax income. 

Wilkinson says she and her husband are hesitant to apply because they don't yet know how long Adaline will need what her mother calls the "lifesaving" formula. 

"She's not able to have anything else."

About the Author

Lisa Xing is a journalist by trade and a historian by degree. She's also a creative writer, photographer and traveller, dabbling in camping, canoeing and crafting. Email Lisa.Xing@cbc.ca.

Comments

To encourage thoughtful and respectful conversations, first and last names will appear with each submission to CBC/Radio-Canada's online communities (except in children and youth-oriented communities). Pseudonyms will no longer be permitted.

By submitting a comment, you accept that CBC has the right to reproduce and publish that comment in whole or in part, in any manner CBC chooses. Please note that CBC does not endorse the opinions expressed in comments. Comments on this story are moderated according to our Submission Guidelines. Comments are welcome while open. We reserve the right to close comments at any time.