Epilepsy NZ reacts to coroner's findings over drug switch

Epilepsy New Zealand’s thoughts are with the families of six people after the Chief Coroner found no clear evidence of a link between their sudden deaths and a change in the brand of the drug lamotrigine.

In 2019 Pharmac advised there would be only one funded brand of the anti-epilepsy drug lamotrigine, Logem.

Judge Deborah Marshall decided to hold a joint inquest given high levels of public interest after several deaths were reported of people who suffered epilepsy and died suddenly.

While no recommendations could be made as no clear link was established, Epilepsy New Zealand (ENZ) supports the Chief Coroner highlighting important evidence around the need to properly communicate with people with epilepsy.

Pharmac estimated it would save $30 million over five years by reducing the number of funded brands of lamotrigine.

ENZ’s Chief Executive, Ross Smith, says "While we acknowledge the Chief Coroner's findings that the deaths were not clearly related to the brand change, ENZ believes Pharmac's decision was ill advised and caused significant and totally unnecessary distress for many people with epilepsy”.

“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.

Mr Smith says the Coroner also noted there seemed to be a general lack of understanding about who should have told people with epilepsy about possible adverse symptoms of the drug switch, and pointed to UK research that an approach putting the patient first lowers the risk for those with epilepsy.

“Epilepsy New Zealand believes that an approach which recognises international best practice and puts the patient first is the right way of dealing with people with epilepsy and hopes Pharmac responds accordingly,” Mr Smith says.

The number of people with epilepsy in New Zealand is currently around 48,000 with 2,200 people diagnosed on average every year.

An Australian study by Deloitte estimated that epilepsy imposed an economic burden on Australia similar to that of lung cancer. That would mean in New Zealand, an annual burden of $2 billion in terms of direct cost and lost opportunity.

Epilepsy New Zealand is the leading charity supporting people living with epilepsy.