A woman who lost her job after her epilepsy drugs were changed without her knowledge has forced a top level health review.
Laura Hume says it was only after her health began deteriorating that she found out she was one of thousands of people who had been switched to a generic drug in a cost saving drive by Pharmac.
Now, the Health and Disability Commissioner has found there is a systemic failure in the way brand switches are communicated to patients and has asked Director-General of Health Ashley Bloomfield to intervene.
Hume, 28, has had epilepsy since the age of five, and it took her until her early twenties to get her seizures under control.
She said her life was turned upside down in 2019 when Pharmac switched more than 10,000 people taking the anti-epileptic drug lamotrigine over to a generic form of the drug.
"I was working for the first time in my life. I'd become stable enough and found a job that I could do. I lost that job because I couldn't cope with the stress," Hume said.
"I've got a five-year-old, I can't be going from 'yeah, I'm doing well' to 'oh my gosh, I feel like I just can't can't do anything'."
It was only after Hume's health went downhill that she found her drugs had been switched. Not only was she in the dark - her doctor was too.
"My GP didn't even know about it. I went to him after I'd seen my neurologist and said this is what's going on - can you help me? And he said 'what brand switch?'."
More than 200 people reported adverse reactions to the lamotrigine brand switch and the chief coroner is investigating whether six deaths were linked to the change.
Hume said those caught up in the brand switch had fallen through the cracks.
"If Pharmac was asked, they said it's all in our heads and it's on us. My GP didn't know. My pharmacist was told it's the same medication and she's like, 'okay, yep'. So who's responsible for this?"
Hume and two others complained to Health and Disability Commissioner Morag McDowell, who called for intervention from Dr Bloomfield.
"I believe the complaints show that there is a systemic issue relating to how the brand change was communicated to consumers," McDowell said.
"Given the potential for ongoing risk and the risk of this happening again in the future, I have written to the Director General of Health to outline my concerns."
McDowell's letter said she was concerned at the lack of clarity over who was responsible for managing and communicating brand changes to patients - especially brand switches which could lead to significant side effects.
GPs often left it to Pharmac to determine whether a brand switch was safe for their patient or assumed pharmacies would contact them about any significant changes, she said.
"In the context of the busy general practice, there is the potential for really important clinical information or clinical points to be lost if GPs are getting inundated with a lot of information about different brand changes."
She wanted Bloomfield to work with Pharmac and other agencies to ensure patients got better information when their brand of medicine was changed.
Pharmac director of operations Lisa Williams said the agency had already introduced a new system for brand switches that allowed some patients who could not tolerate a brand change to stay on their original medicine.
"That means that, depending on the product, 5 percent or so of patients could remain on the previously funded brand."
Williams said Pharmac went to considerable lengths to prepare patients for the lamotrigine brand change, including extending the transition period from three to five months and offering patients a free GP visit if they needed it.
Information about the change was widely distributed and Pharmac had also engaged with interest groups such as Epilepsy New Zealand, she said.
But Williams said Pharmac was happy to work with the Ministry of Health on improving its systems.
"What we've learned is that there are small groups of people that brand changes are not successful for - for whatever reason - and we want to create mechanisms to ensure that people can stay on their previous brands."
For Hume, the big win was the Health and Disability Commissioner asking the Ministry of Health to help design a new system for brand changes.
"Hearing that someone is actually listening and willing to say 'hey, this actually needs something done about it' is huge. We actually have someone backing us rather than saying 'no, it's all in your head - go away'."
This issue will not go away for some time yet. The government has just launched its own review of Pharmac, which includes looking into brand switching, and the chief coroner is due to report in the coming weeks.
A Ministry of Health spokesperson said it was considering how best to deal with the commissioner's recommendations and it may be that they would be folded into the government's review of Pharmac.