Northern family pushing province to include costly formula to avoid three-year-old's hospitalization
TIMMINS -- The Hetu family in Cobalt spent most of three-year-old Jeremy's life searching for the perfect nutrition formula to keep him healthy while dealing with his rare genetic disorder and dietary restrictions.
After mother Melanie Hetu found a plant-based, milk and soy-free formula to feed Jeremy through his tube in January, she said his condition improved immensely, compared to other products she and her health team have tried.
"(Doctors who have) followed him since infancy, they couldn't believe how well he looks," Hetu told CTV in a Zoom interview. "He has colour in his face, he's not pale like he used to be."
But with the formula costing around $900 per month, the family has been struggling to find stable funding.
The province's youth health plan, OHIP+, covers other nutritional supplements but not Hetu's particular formula — and she said she's spent months trying to resolve that.
Running out of options
Having exhausted most of the charitable funds she managed to obtain and with her disability support unable to sustain the expenses, Hetu said she'll soon be in a difficult position.
"By mid-October, we'll be out of formula and out of funding," she said. "We'll be back in Ottawa, in the hospital, just for him to eat."
Hetu said staff at the Children's Hospital of Eastern Ontario in Ottawa have been trying to find workarounds, applying to Ontario's Ministry of Health and may even appeal to the formula's manufacturer to donate some of the product.
The family reached out to Timiskaming-Cochrane MPP John Vanthof, in hopes that he can work with the ministry. The goal would be to get the formula on its list of covered items under the Ontario Drug Benefit, which Hetu or her son Jeremy could access through OHIP+ or the Ontario Disability Support Program.
Vanthof told CTV he has been discussing the issue with the ministry and is preparing a brief for minister Christine Elliott. Talks are going well, he said, and he hopes the ministry recognizes the severity of the situation.
"Not just look at the medication itself but look at the ramifications of not proceeding with this," Vanthof said in a Zoom interview. "It's going to hurt the child."
More gaps in provincial health coverage
Meanwhile, Timmins mother of three Chantal Sirois has been advocating for people facing roadblocks with the province's health plans.
In her case, a condition of OHIP+ where it denies coverage when the person has private insurance has her in financial stress.
While Sirois said she does have other health coverage, it doesn't cover the formula she needs to nourish her over six-month-old boy Finn. The Ontario Drug Benefit does cover the formula under OHIP+ but its policy has Sirois paying around $80 every two days, totalling around $2,000 every four to five weeks.
"I can't understand why something that might be covered for my neighbour would not be covered for us," Sirois told CTV.
She said that puts hardship on anyone facing unique or specific circumstances, leading some to "fall between the cracks or the fine print."
Changing policies to help families
Timmins MPP Gilles Bisson took Sirois' issue to the provincial legislature in July and wrote a follow-up letter to premier Doug Ford in mid-August. He's looking for the government to roll back the OHIP+ policies from its change in April 2019 to allow more people coverage.
"People are having to pay for medication that otherwise should be covered by the plan that is currently in place," Bisson said in the legislature on July 21. "I call on this government to [...] allow medication for people under the age of 25, such as nutritional supplements, to be paid for as they were before because otherwise, it's a grave injustice."
As of yet, the ministry has not yet announced any adjustments to OHIP+.
Dealing with government gridlock
As for Hetu's issue with getting her formula covered, the Ministry of Health sent an emailed response to CTV News, saying the particular item is a newer product.
"New nutrition products may be considered for funding through the ODB Program (and listing on the ODB Formulary) if the manufacturer makes a submission to the ministry to have the product considered for listing," read the statement. "The ministry has not received a submission from the manufacturer for (this product)."
Vanthof said he is working with the ministry to get Hetu's formula special consideration for coverage. When asked about future families that could have similar issues, he said they will have to be dealt with an a case-by-case basis.
"This is, sadly, not going to be a 'one-size-fits-all' solution," Vanthof said. "(Cases like this) are going to continue to come up and [...] when we find out about them, we'll do everything we can to try and solve them."
Hetu, however, said her family can't wait for the usual political process, with a looming deadline to obtain funding for her formula so that Jeremy can continue being cared for at home.
"This is necessary to have coverage because [...] he will end up living in the hospital," Hetu said.