The birth of twins in January for an Oshawa couple quickly turned from a dream to a nightmare — medically and financially.
Jamie Barrette and Trevor Grant’s twins Shaylyn and Grayson were born six weeks premature on Jan. 28. Shortly after, they were diagnosed with a disease common in premature babies — necrotizing enterocolitis (NEC).
Shaylyn was immediately taken off all food, labeled critical and put onto an IV. Three days later, things got worse: Grayson began to exhibit the same symptoms and was also put on an IV.
The good news for the youngest twin was that because his NEC was caught earlier than his twin’s, his symptoms were less severe. But neither newborn came out of the ordeal unscathed.
NEC is considered the most common life-threatening gastrointestinal issue in premature infants, and is a leading cause of death.
In more serious cases the disease can lead to a perforated bowel, which is sometimes fatal. In the best of cases, the stomach lining and the baby’s ability to digest normal food is completely shot.
For that reason, babies with NEC need a special amino-acid based formula called Neocate that doesn’t need to be digested, just absorbed by the body.
The prescription formula gives the baby’s body a chance to rest and heal, so that eventually consuming normal food becomes possible.
Neocate is extremely expensive, so the couple called Sun Life, the insurance company that covers Grant through his employment with Coca-Cola.
Initially, they were told they’d be 100 per cent covered (more than the traditional 80 per cent), up to a maximum of $20,000 per year, per child.
“We cried in happiness because that is a huge load off of us,” Barrette said. “(Because) we have five kids together now.”
Barrette says there’s no way they could afford, on their middle-class income, the nearly $40,000 it would cost to feed both twins for a year.
But the jubilation was short-lived. After they filed their first prescription for Neocate, Sun Life told them the company does not cover infant formula, and the previous conversation had been a mistake.
Barrette objected, strongly, saying the first person she spoke to had been definitive in his affirmation. Sun Life investigated the matter over several weeks, coming back to the couple in late May with the explanation that the mistake had been the result of an error on the Drug Identification Number (DIN).
The error had been corrected, Barrette was told, and Sun Life would provide eight cans of Neocate by way of apology. Eight cans would not last the twins more than half a week at most.
A spokesperson for Sun Life Financial declined to comment on specific cases, but pointed to the Canadian Life and Health Insurance Association (CLHIA) for insight into how policies determine what is covered. The trade association represents 99 per cent of life and health insurers in the country, according to its vice president of external relations, Wendy Hope.
Hope said the reason Neocate is not covered by many standard plans is because it is considered a nutritional supplement, not a drug. Despite being medically necessary for some infants, Neocate lacks a DIN, which is part of why most insurance companies do not consider it a drug.
But ultimately, Hope said, what will be covered under most standard plans is up to the employer, or “plan sponsor.”
“We totally, totally empathize with these families,” Hope said. But, “there is no cookie-cutter solution and that’s why there are differences across plans. It depends on so many different parameters.”
There is a precedent for an exception. In Alberta, Lisa Caskenette was able to successfully lobby Alberta Blue Cross to cover the hypoallergenic formula for her son, Isaac, in 2012.
Her Facebook page, Isaac Needs Neocate, received widespread attention, both online and from local media. After fighting the insurance company for several months, Caskenette succeeded in getting coverage for 80 per cent of the pricy formula.
“In Alberta, the big argument was it doesn’t affect their day-to-day living,” Caskenette said. “Well I don’t see how it doesn’t; it’s the only thing they can eat.”
In the end, after a lengthy battle involving the Alberta Legislative Assembly and a lengthy appeals process with her insurance company, Caskennete said Alberta Blue Cross will offer the formula to families that appeal to get it. She said she’s aware of nine other families who have had Neocate covered in the province through the exception she helped to create.
Barrette and Grant are hoping to duplicate Caskenette’s success in Ontario, but have so far had limited success. For now, Barrette said she’s appealing the decision with the Sun Life ombudsperson, and with Coke. She plans to keep fighting as long as it takes.
“I don’t have a choice,” Barrette said. “It’s sell our house or continue to fight. We don’t have any more choices.”