The mother of a young girl with epilepsy says her "jaw dropped" when she discovered how much it cost Pharmac to fund her discontinued medication, Lamictal.
For two years, it cost just $800. But Pharmac switched her and about 12,000 other patients to a different brand of lamotrigine last year anyway, saving money in the process.
Since then seven deaths have been linked to the generic drug, Logem, and nearly 2500 people have successfully applied to go back on Lamictal and Arrow-Lamotrigine, another discontinued lamotrigine brand.
"It's never been done before. No other country has ever forcibly changed every patient to one brand... to save money," mother and advocate Arabella Gubay told The AM Show on Thursday.
"They wanted to save $6 million a year, but we've potentially lost seven people to this drug switch. In cold, hard terms, Treasury puts the value of a life at about $5 million - it wasn't worth it."
Her daughter, five, was diagnosed with epilepsy two years ago. She went from having "15 or 20" seizures a day to zero while on Lamictal.
"She's happy, she's healthy and she gained seizure control."
The cost of two years' worth of Lamictal is equivalent to "about one-and-a-half neurology appointments", Gubay said.
"If she lost seizure control and needed one or two appointments, that would cancel out that gain for Pharmac... There are no natural therapies for epilepsy. If there were, I'd use those. But we're in a position where we need this drug."
Logem is identical to Lamictal in terms of its ingredients, and its cheaper cost means Pharmac will have more money to spend on other medicines. But the deaths and hundreds of reported adverse reactions have prompted an investigation by the Chief Coroner, and MedSafe has told patients still taking Lamictal not to switch, if possible.
The Government has refused to get involved, saying decisions about medicine are best left to the experts at Pharmac, not politicians. Doctors have also warned against jumping to conclusions, as sudden unexpected deaths in epilepsy (SUDEP) happen even when people are on effective medication.
"People have been dying from this condition for many years well before Pharmac made this change, there is clearly a baseline rate where up to 26 people a year have died of SUDEP," Auckland City Hospital neurologist Peter Bergin told NZME in January. A study published in the New Zealand Medical Journal that month found 166 people had fallen victim to SUDEP between 2007 and 2016 - most of whom were taking their medicine properly.
Gubay wants all three forms of lamotrigine funded - Lamictal, Logem and Arrow-Lamotrigine.
"We need all three brands of the drug funded. We need controls in place at pharmacies to stop accidental switches of epilepsy medicine, like they have in the UK. And we need Pharmac to be forced to follow the international brand-switching... guidelines so that this never, ever happens again."
Epilepsy New Zealand has called for a ministerial inquiry into the switch, but Health Minister Chris Hipkins says he won't consider that while the coronial inquiry is ongoing.