Toronto couple concerned after learning OHIP+ will not cover daughter’s anti-seizure medication

February 9, 2018

By Deron Hamel

Monika and Adam, a couple from Toronto, say they were “shocked” to learn in January that the new Ontario Health Insurance Plan (OHIP) drug program OHIP+ will not cover the cost of their four-year-old daughter Ava’s anti-seizure medication.

OHIP+, which came into effect Jan. 1, is providing more than 4,400 drug products free to anyone under 25 with chronic health conditions who has a prescription and a valid OHIP card.

But the medication Ava takes, a generic version of Keppra, is considered “limited use” and not covered by OHIP+ because Ava did not meet the eligibility requirements, her parents say.

Monika and Adam were told that to be eligible for a limited-use medication under OHIP+, a patient must first try two other formulations that don’t work.

However, after Ava was diagnosed with focal epilepsy in summer 2017, two neurologists at Toronto’s Hospital for Sick Children (SickKids) agreed Keppra would be the best medication for her to take because it poses minimal side effects and does not require regular blood tests to monitor the medication’s effect on kidneys.

“It was a complete shock because it was covered before, so why isn’t it covered now?” Monika says.

“It’s very frustrating,” Adam adds. “You’re covered, you’re moving along … and then, out of the blue, you’re told you’re not (covered).”

The couple supports the well-meaning intention of OHIP+, but Monika and Adam say it’s a “flawed strategy” because some Ontario families will now struggle to pay for medications previously covered by OHIP.

Monika and Adam say their issue with OHIP+ is that medications people were already taking were not grandfathered when the program came into effect. There is a 60-day grace period, but after that Ava’s prescription will not be covered by OHIP+.

While the couple has extended medication coverage for Ava’s prescription, they’re yet to hear if their daughter’s medication will continue to be covered.

For Monika and Adam, it’s the principle of the situation that’s most upsetting.

“We’re in a situation where we will be able to (deal with the costs), but there are lots of other families who really can’t afford (the costs), and for them, it’s going to be ‘do I put food on the table or keep my child on these drugs that work?’ ” Monika says.

Most importantly, Monika and Adam say they’re not prepared to subject Ava to trials with other anti-seizure medications covered by OHIP+ when generic Keppra is working well for their daughter.

Ava had to cope with the initial side effects of the generic Keppra while her body became accustomed to it, and Monika and Adam say they do not want to have to put their daughter through that process again.

And no one else should, either, they add.

“We do not want to have to wean her off one medication just because the government dictates it – they don’t know our situation, and they’re not the ones who have to sit with her when she is crying in pain,” Monika says.

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at deron(at)axiomnews.com.

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