Families have been left in the dark about whether Pharmac's decision to switch the brand of its funded epilepsy medication killed their loved ones.
Findings from a major coronial inquest into six sudden epilepsy deaths, released today, found "no clear evidence" to link the brand switch to the seizures that led to the six deaths.
"I'm in shock and hurt and I'm confused," Michelle Towns, who lost her 31-year-old son Andre Maddock, said.
"I wish I wasn't left wondering why my son died ... it's left us with no outcome and I do still think he died because of that brand switch," she said.
READ MORE OF MICHELLE'S STORY: Sudden epilepsy deaths: Grieving mum speaks out ahead of coronial inquest
The inquest in the sudden deaths came after Pharmac faced a raft of criticism for changing the brand of anti-seizure medicine lamotrigine to a generic form of the drug called Logem.
Towns said a more thorough investigation should have been conducted, including testing seizure rates in other epilepsy patients who had been switched to Logem.
While Chief Coroner Judge Deborah Marshall couldn't make any formal recommendations, as no clear link was found, she was critical of multiple failures by Pharmac to effectively communicate the brand change.
• None of the patients who died had received Pharmac's pamphlet about the brand switch - and even if they did, it did not include any of the possible adverse effects.
• None of the doctors who gave evidence discussed the option not to switch the brand of the drug under an "exceptional circumstances funding". They also didn't discuss possible symptoms after the brand switch.
• The advice Pharmac distributed to GPs about the brand switch was sufficient but there were no procedures in place to ensure that its methods of communication were effective.
While Marshall found Logem was bioequivalent to the brands it replaced, she suggested testing serum levels in patients before and after the brand switch could have been "valuable to provide confidence to consumers and prescribers".
She said tools such as Seizure Safety Checklist and EpsMon App, used in the UK, could be useful to GPs and patients when brand switches occur.
Jessica Reid, 23, was another New Zealander who died after the brand of her epilepsy medication was changed. She was cremated in the dress she never got to wear to her wedding.
Her sister Hannah Reid said overall the findings were an anticlimax because all six cases could have been linked to the brand change but they also could have been linked to other variables.
"But in Jess's case we knew that she had been switching brands for a while so specifically changing the brand for us wasn't the major issue, it was more the communication side of things and the cracks in the system and I think the Coroner did a really good job of addressing that," Reid said.
Jessica's fiancé Alex Bradley wanted to reiterate that regardless of the brand change there were still all these cracks in the health system that haven't been patched up, Reid said.
"There were notes in her medical records saying if these changes were made to her meds, then these things should have been done and they weren't actioned by the GP.
"I think GPs, pharmacists and anyone working in the health sector needs to take a really good look putting that patient's care first," Reid said.
READ MORE OF HANNAH'S STORY: Heartbroken 28yo speaks out about losing epileptic fiancée - 'failure of the healthcare system'
Epilepsy New Zealand chief executive, Ross Smith, said while the charity acknowledged the findings it still believed 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."
Pharmac's decision to change brand of medication
The brand switch affected nearly 11,000 patients, sparking an internal review, commissioned by Pharmac, New Zealand's Government-funded drug buying agency.
The 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 brought back the original funded medicine which patients could apply to switch back to.
Epilepsy New Zealand chief executive Ross Smith last November told the Herald part of the problem 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.
Pharmac director of operations Lisa Williams said the company accepted the Coroner's comments that not all information about the brand change reached patients.
"We offer our deepest condolences to the families and friends of Ricky Blackler, Reuben Brown, Krystle Loye, Andre Maddock, William Oliver, and Jessica Reid," she said.
"I attended every day of the inquest and listened to all evidence shared. The strength of the families of those who passed away was inspiring and I applaud them for taking part."
She said the Coroner found the evidence does not clearly link the brand change to the deaths.
"However, she made comments that our patient leaflet did not include all the information that people taking lamotrigine needed to know. It is our responsibility to ensure that health professionals are informed of brand changes, and that suitable resources are available for patients."
"We will be working with the Ministry of Health to improve how brand change information is shared across the health sector and to 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."