Unexplained epilepsy deaths: Inquest resumes - 'gold stamp' not available

Chief Coroner Judge Deborah Marshall will this week hear from Pharmac and Medsafe at the second part of major coronial inquest into unexplained epilepsy deaths. Photo / Peter Meecham

The "gold stamp" for examining a brain to help determine a cause of death is not available in New Zealand - and has been questioned at an unusual coronial inquest into six unexplained epilepsy deaths.

It comes after families of the lost loved ones shared their heart-breaking stories at the first part of the inquest at Auckland District Court last November.

They believe their loved ones might still be here if it wasn't for New Zealand's drug-buying agency, Pharmac, switching medicine known as lamotrigine to a generic form of the drug called Logem.

Today, the second part of the inquest - which will include hearing from specialists, Pharmac and MedSafe officials, has begun at the coroner's court in Auckland.

Dr Katherine White, a forensic pathologist at Auckland District Health Board, said having a neuropathological examination in epileptic deaths was the gold stamp but was not a reality in New Zealand.

"We tend to go to a neuropathologist in Edinburgh," White said.

That wasn't used often because it was expensive and due to his location took time to get reports completed, she said.

Sarah Wroe, a lawyer representing three of the families, asked White what a neuropathologist could offer that a general pathologist couldn't.

White said: "They would have a good research basis for wanting to look the brains that would add to the information that is being accumulated.

"They would have a better understanding of the cellular and genetic implications that are evolving all the time," White said.

But she said a pathologist was still capable of picking up structural abnormalities of the brain.

White said epilepsy death was an "umbrella term" and there was many ways someone could die from epilepsy including SUDEP (sudden unexplained deaths of epilepsy), complications of epilepsy - for example drowning or crashing while having a seizure, or status epileptics.

However, in at least one of the victim's autopsy report the cause of death was documented only as "epilepsy" because pathologists couldn't rule out if hyperthermia was a contributing factor.

Tomorrow, the court was expected to hear from MedSafe official Chris James and neurologist Dr John Mottershead.

About the brand switch:

The brand switch affected nearly 11,000 patients, sparking an internal review, commissioned by Pharmac which found no wrongdoing in its decision.

Logem still remains publicly available, although the agency also brought back the original funded medicine which patients could apply to switch back to.

Epilepsy New Zealand chief executive Ross Smith told the Herald, in November last year, that 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, warned Pharmac about changing brands, saying it should be avoided 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.

Doctors speaking at the inquest all said they did not fully consult the patient before dispensing the different brand of the drug and often did not outline the risks.

One said he did not even know about the brand switch until he read about the death of his patient in the media.

The issue is clouded by the fact Sudep (Sudden Unexpected Death in Epilepsy) 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.

Among the unexplained deaths were a farmer, a scaffolder, a pet groomer, a university student, a new dad, a daughter.