'No clear link' between deaths of six people with epilepsy and medication switch, chief coroner finds

A hand holding Logem, a generic form of the anticonvulsant medicine lamotrigine.
Pharmac in 2019 made Logem the only funded brand of lamotrogine, having estimated it could save itself $30m. Photo credit: Newshub.

There is no clear evidence linking the deaths of six people who suffered epileptic seizures to a change in the brand of medication they used, the chief coroner has found.

It comes after a joint inquest was launched last year into whether switching to Logem, a generic form of the anticonvulsant medicine lamotrigine, contributed to the deaths of Ricky Blackler, Reuben Brown, Krystle Loye, Andre Maddock, William Oliver and Jessica Reid.

Pharmac in 2019 made Logem the only funded brand of lamotrigine, having estimated it could save $30 million over five years by reducing the number of brands it funded.

As a result, about 89 percent of patients - 10,700 Kiwis - had their medication switched. An internal Pharmac memo noted that if patients suffered adverse effects during the transition it would be associated with the brand switch.

Not long after, seven deaths were reported to the Centre for Adverse Reports Monitoring (CARM) as potentially being linked to the change. All but one were probed as part of the inquest.

But in findings released on Friday, chief coroner Judge Deborah Marshall said she was unable to make any recommendations or comments as "the evidence does not clearly link the brand switch to the seizures that led to the deaths".

However, she noted Pharmac's communication strategy on the change in medication was "lacking to the extent there was confusion over who was to deliver the key messages".

"Pharmacists delivered the brand switch message, but important messages such as the counselling fee, symptoms to be aware of and the exceptional circumstances funding available did not reach patients," she wrote.

"Many GPs thought pharmacists would deliver the brand switch message."

She said as a result, some messages from pharmacists and GPs to those whose medication changed were "lacking in some crucial areas".

A pamphlet produced by Pharmac for consumers wasn't received by any of the deceased, evidence suggests - and even if it had been, Judge Marshall says it wouldn't have alerted them to the potential for any adverse symptoms arising from a brand switch.

On the contrary, the pamphlet read: "Logem has the same active ingredient as the other brands and is delivered to the body in the same way. This means your new brand of medicine works the same as your old brand. You shouldn't notice any difference in how it affects you."

Jo Oliver, the mother of one of the six people whose deaths sparked the inquest, told Newshub Judge Marshall's criticism of Pharmac's communication strategy was warranted.

Her son, 26-year-old William Oliver, died in August 2019 from a seizure four months after switching to Logem.

"The communication between Pharmac, the pharmacists, and the doctors is not good at all," she said.

Oliver now wonders whether Pharmac will follow the useful observations listed by Judge Marshall in her findings.

"Our health system - we need to change it," she said. "Pharmac needs to sit down and listen to what people are saying… it doesn't matter what medication it is, it's got to be reviewed."

Pharmac vows to improve communication

In response to Judge Marshall's findings, Pharmac said it accepted not all information about the change in brands reached patients.

It has now vowed to make efforts to improve its communication.

Pharmac's director of operations Lisa Williams said the organisation will be working with the Ministry of Health to improve how information on medication changes are shared across the health sector and clarify who is responsible for passing this onto patients.

"This is a joint project that will also include the Medical Council, the Pharmacy Council, and the Royal New Zealand College of General Practitioners," she said.

"It is our responsibility to ensure that health professionals are informed of brand changes and that suitable resources are available for patients."

Williams acknowledges Pharmac's pamphlets did not include all the information people taking lamotrigine needed to know.

Pharmac's decision caused 'unnecessary distress' - Epilepsy NZ

Epilepsy New Zealand (ENZ) said it supports Judge Marshall highlighting the need to communicate properly with people with epilepsy.

ENZ chief executive Ross Smith says while the inquest was unable to establish a clear link between the deaths and the medication switch, Pharmac's decision was "ill-advised".

"[It] caused significant and totally unnecessary distress for many people with epilepsy," he said.

"The decision left vulnerable people at risk of a loss of seizure control - a change that could lead to drastic life changes such as losing their livelihood and being prevented from driving."

In her findings, Judge Marshall referred to a UK study that showed a "patient-focused approach lowers risk for epilepsy patients", arguing this should include open discussions around the risk of sudden epilepsy deaths and side-effects of medication changes.

Smith agreed with this assessment, and said he "hopes Pharmac responds accordingly".

"ENZ believes that an approach which recognises international best practice and puts the patient first is the right way of dealing with people with epilepsy."