Unexplained deaths from epilepsy: the investigation begins with the death of six people

A farmer, a scaffold, a pet groomer, a college student, a new father, a daughter.

And the common thread: they all had epilepsy and they all died after their government-funded brand of drug.

changed without notice.

The six New Zealanders, aged between 27 and 35, lost to sudden unexpected death from epilepsy (Sudep) are this week the subject of a rare coronary investigation at the Auckland District Court.

Yesterday, grieving mother Johanna Oliver said her 26-year-old son complained of feeling like a zombie shortly after the rebrand.

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

“He was studying computer science, we had gotten along very 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’s rebrand after reading about his patient’s death in the media.

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

Another parent spoke boldly of her loss.

Rotorua’s father, Gary Loye, said he found his youngest daughter, Krystal, 35, dead at the foot of his bed 40 minutes after he comforted her to sleep.

It was early morning on February 23, 2020.

Loye was watching a Super Rugby Blues vs Bulls game in the living room when he heard his daughter gurgling; He ran in and sat with her until she fell asleep.

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

Loye, who described her daughter as 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 his life, he had about 60 seizures a day, and then for nearly two years, he only had two, Loye said.

In September of last year, just a few months before her death, Krystal’s doctor changed the brand of her medication to Logem.

I remember being told there was a brand change and I remember asking ‘will the change make a difference?’, But the doctor said ‘no’ … I asked him why there had been a change and he said it was cheaper “, Loye told the poll.

Krystal’s doctor, Dr. David Sharples, who spoke in court, said that he did say it was cheaper and that Pharmac considered it equivalent to his previous drug, which he had been taking for about a decade.

Sharples said she never spoke to the family about the Sudep risk.

Parents believe Pharmac-funded drug is to blame

The investigation comes after New Zealand drug purchasing agency Pharmac faced a series of criticism for rebranding the drug, affecting 11,000 patients, prompting 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, although the agency also repurchased the originally funded drug.

Epilepsy New Zealand CEO Ross Smith told the Herald last week that part of the problem was that patients were not being properly consulted when a brand change occurred, and that didn’t just apply to this drug.

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

They also recommend proper consultation with patients before switching, including describing the risks and tips for coming back if you feel unwell.

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

The problem is clouded by the fact that Sudep affects one in every 1000 young adults (ages 20-45), where no cause of death can be found.

MedSafe has emphasized that anyone who is taking epilepsy medications should continue to take them, and if you have concerns, you should speak with your doctor.

Chief Coroner Deborah Marshall will continue to listen to families and physicians this week before Pharmac is expected to respond in February next year.

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