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A grieving father related through tears that he found his daughter dead in bed after having a seizure, after only one seizure in the previous two years, following a change in her epilepsy medication.
Gary Loye’s daughter, Krystal Loye, 35, died in February this year while in the home she shared with her father in Rotorua.
His death is one of six subject to an investigation by Chief Coroner Deborah Marshall that began in Auckland District Court on Monday, looking into whether switching to Logem, a generic form of the anti-seizure drug lamotrigine, caused or contributed to their deaths. .
SUPPLIED / Stuff.co.nz
As of October 1, 2019, Logem was the only funded epilepsy drug available, except in exceptional circumstances.
Last year, a change in Pharmac funding resulted in 11,000 New Zealanders changing their medications, a measure that has reported seven deaths to the Center for Adverse Report Monitoring (CARM) as possibly linked to the change.
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Loye, who had an intellectual disability and epilepsy since she was a baby, had been largely seizure-free for 2-3 years before her death, except for a seizure in August 2019, which her father says was not. infrequent when ill.
On the morning of February 23, a Sunday, Gary Loye was watching a rugby game when he heard his daughter “chirp.”
He got up from the bed and saw that she was having a seizure. He sat next to her, comforting her, waiting for the shaking to pass.
DAVID BLANCO / THINGS
In December 2019, Chief Coroner Deborah Marshall announced a joint investigation into the first four deaths, which has been expanded to include two more people.
Loye said that while the seizure was not “particularly bad” by Krystal’s standards, having had some “very violent” attacks in the past, it was “unusual” in that she had only had a couple of seizures in recent years.
When she stopped shaking, Loye asked if Krystal was okay, she replied yes.
He left her lying on her side while she went back to sleep.
At halftime of the rugby match, about 40 minutes later, he went into her room to check on her and found her lying face down. His lips were “blue,” he told the coroner.
He ran out of the house and yelled for a neighbor to call 111, and they gave him instructions on how to give CPR while he waited for paramedics, but “she was gone.”
Loye said she received very little information about the rebrand, including possible side effects or adverse reactions.
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The investigation into the six deaths will continue until early 2021.
“It’s stuck in my mind all the time … why change something that isn’t broken?”
Loye said that Krystal was “pure of heart” and “had a smile for everyone”.
“We miss her terribly.”
This week, Marshall will hear from the families of six patients as part of an ongoing investigation into the cause and circumstances of the deaths, and whether the rebrand affected seizure control.
Among those killed are Ricky Blackler, a 24-year-old scaffold; Reuben Brown, a 27-year-old farmer; Loye; sales representative Andre Maddock, 40; student William Oliver, 26; and Jessica Reid, a 23-year-old animal groomer at a pet store.
Pharmac initially funded three brands of lamotrigine, an anticonvulsant drug, also used to treat bipolar disorder: Lamictal, Arrow-Lamotrigine, and Logem.
As of October 1, Pharmac has funded Logem only, except in exceptional circumstances.
The doctors of the two deceased patients discussed Monday, Loye and Will Oliver, were unaware that the rebrand had occurred.
Oliver’s GP learned of Pharmac’s change through media reports about his death.
The rebranding is now at the center of hundreds of adverse reaction reports, with people reporting seizures or increased seizures, as well as memory loss, spasms, headaches, confusion, and mood problems.
It is the first part of a two-part investigation, which will continue in February 2021.
