Unexplained epilepsy deaths: Inquest opens into deaths of six people

A farmer, a scaffolder, a university student, a new dad, a daughter.

And the common thread – all had epilepsy and all died after the brand of their Government-funded medication

changed without warning.

The six New Zealanders, aged between 27 and 35, lost to Sudden Unexpected Death in Epilepsy (Sudep) are this week the subject of an unusual coronial inquest at Auckland District Court.

Yesterday, grieving mum Johanna Oliver said her 26-year-old son complained of feeling zombie-like shortly after the brand switch.

On the frosty Sunday morning of August 12 last year, William Oliver was found by his girlfriend dead in the back of his car.

“He was studying computer science, we had been getting along really well. He had his whole life ahead of him,” Johanna told the Herald.

William’s GP Dr Joshua Tang said he only found out about the drug brand switch after reading about his patient’s death in the media.

The Dunedin mum read a note from William’s 17-year-old sister aloud to the courtroom: “We miss you and I love you, we are fighting for you and your story to be told in a way that honours the legacy that you have left behind and in a way there was justice and truth.”

Another parent spoke bravely of his loss.

Rotorua dad Gary Loye said he found his youngest daughter Krystal, 35, dead at the end of her bed 40 minutes after he had comforted her back to sleep.

It was early in the morning of February 23, 2020.

Loye was watching a Blues vs Bulls Super Rugby game in the lounge when he heard his daughter gurgling – he rushed in and sat with her until she fell back asleep.

“She was in bed, I just held her, comforting her and waited for it to pass and then she went back to sleep … she’d had more violent ones in the past.”

Loye, who described his daughter as having a smile for everyone, said the seizure was unusual because she had only had one other episode in nearly two years.

At one stage in her life she would get about 60 seizures a day and then for nearly two years she had only two, Loye said.

In September last year – just months prior to her death – Krystal’s doctor switched the brand of her medication to Logem.

I remember being told there was a brand change and I remember asking ‘will the change make any difference’ but the doctor said ‘no’ … I asked why there had been a change and he said it was cheaper,” Loye told the inquest.

Krystal’s doctor Dr David Sharples, who spoke in court, said he did say it was cheaper and deemed equivalent by Pharmac to her previous drug which she had been on for about a decade.

Sharples said he never talked to the family about the risk of Sudep.

Parents believe Pharmac-funded drug to blame

The inquest comes after New Zealand’s drug-buying agency Pharmac faced a raft of criticism for switching the brand of the drug, affecting 11,000 patients, sparking an internal review.

A Pharmac investigation found no wrongdoing in the decision to change the brand of the drug it funded, and Logem still remains publicly available – though the agency also bought back the original funded medicine.

Epilepsy New Zealand chief executive Ross Smith last week told the Herald part of the issue was patients weren’t being properly consulted when there was a brand change – and that didn’t just apply to this drug.

The country’s Medicine Safety Authority, MedSafe, says Pharmac should avoid changing brands whenever possible as there is a risk of destabilising treatment for these patients.

They also advise proper consultation with patients before switching, including outlining the risks and advice to come back if it doesn’t feel right.

Both doctors who spoke in court today said they did not fully consult the patient before dispensing the different brand of the drug.

The issue is clouded by the fact Sudep affects one in 1000 young adults (aged 20-45), where a cause of death cannot be found.

MedSafe has stressed anyone taking anti-epilepsy medication is to keep taking it and if they have concerns to talk to their doctor.

Chief Coroner Judge Deborah Marshall will continue to hear from families and doctors this week before Pharmac is expected to give its response in February next year.

A Pharmac spokeswoman said representatives of the agency were scheduled to give evidence in late February 2021, so it was not appropriate to comment during the proceedings.

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