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.

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

  1. Laurie

    My son just moved back from the states after a serious brain injury that nearly cost him his life ,caused by a fall from a seizure and meds that did not work he is now on keppra that is working and we need to fill this prescription here , unsure if ohip will cover this ! About to find out ! This is just wrong :( .

  2. Kathleen Adams

    I am an adult and diagnosed in 2010 with epilepsy. Started on Keppra in 2011. Thank goodness I have benefits. My problem came about when one brand lowered the price and my benefit company was going to make me pay the extra—I should not have to drug store shop just to get the cheaper drug. Spoke with my specialist and asked for him to order all meds as Brand name only. I work in health care with kids and fully understand what you are talking about. I have seen families wanting everything covered and handed to them and families as yourself, knowing that your daughter needs the medication and works for her. The government unfortunately has no clue about healthcare, not on the agenda until it affects them. Keep advocating for your daughter, sometimes if enough people make waves things might change

  3. Monika

    I’m sorry to hear this. We have opted not to switch our daughter off of the levetiracetam because the medication works for her. For now, we are paying out of pocket and continuing to advocate to government to adjust the program.
    When she initially started on the medication, we went through weeks of stomach pains, lack of appetite, irritability, fatigue and leg pain. After about 6 weeks she stabilized and we have not had any issues.

  4. Pauline

    We are in the same boat our son recently was switched if you don’t mind me asking what we’re your daughters adjustment symptoms our son has a very low cranky mood since starting a few weeks ago? Appetite is also altered.

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