A woman who lost her job after her epilepsy medications were unwittingly changed forced a high-level health check.
Laura Hume says it was only after her health began to deteriorate that she discovered she was among the thousands who had been switched to a generic drug as part of a reduction campaign costs per Pharmac.
Now the Health and Disability Commissioner has found that there is a systemic failure in the way brand changes are communicated to patients and has asked Chief Health Officer Ashley Bloomfield to step in.
Hume, 28, has suffered from epilepsy since the age of five and it took him until his twenties to get his seizures under control.
She said her life was turned upside down in 2019 when Pharmac changed more than 10,000 people taking the antiepileptic drug lamotrigine to a generic form of the drug.
“I was working for the first time in my life. I became stable enough and found a job I could do. I lost this job because I couldn’t cope with the stress, ”Hume said.
“I have a five year old, I can’t go from ‘yes I’m fine’ to ‘oh my god I feel like there is nothing I can do’.”
It was only after Hume’s health deteriorated that she found out that her medications had been changed. Not only was she in the dark – her doctor was too.
“My GP didn’t even know that. I went to see him after seeing my neurologist and told him that was what was happening – can you help me? And he said ‘which brand to change?’ . “
More than 200 people have reported adverse reactions to the rebranding of lamotrigine and the Chief Coroner is investigating whether six deaths were linked to the switch.
Hume said those caught up in the rebranding fell through the cracks.
“If we asked Pharmac, they said it’s all in our heads and it’s on us. My GP didn’t know. My pharmacist was told it was the same drug and she said: ‘okay, yes’. So who is responsible for this? “
Hume and two others complained to Health and Disability Commissioner Morag McDowell, who called for Dr Bloomfield’s intervention.
“I think the complaints show that there is a systemic problem with the way the rebranding was communicated to consumers,” McDowell said.
“Given the potential for ongoing risk and the potential for it to happen again in the future, I wrote to the Chief Health Officer to express my concerns.
McDowell’s letter indicated that she was concerned about the lack of clarity on who was responsible for managing and communicating brand changes to patients – especially brand changes that could lead to significant side effects.
GPs often left it up to Pharmac to determine whether a rebranding was safe for their patient or assumed pharmacies would contact them about any material changes, she said.
“In the context of a very active general practice, there is a risk of losing clinical information or really important clinical points if general practitioners are inundated with a lot of information about different brand changes.
She wanted Bloomfield to work with Pharmac and other agencies to make sure patients got better information when their drug brand was changed.
Pharmaceutical Director of Operations Lisa Williams said the agency had already introduced a new rebranding system that allowed some patients who could not tolerate a rebranding to keep their original drug.
“This means that, depending on the product, about 5 percent of patients could stay on the previously funded brand.”
Williams said Pharmac has gone to great lengths to prepare patients for the rebranding of lamotrigine, including extending the transition period from three to five months and offering patients a free visit to the doctor if they needed it.
Information about the change has been widely disseminated and Pharmac has also engaged with interest groups such as Epilepsy New Zealand, she said.
But Williams said Pharmac was happy to work with the Department of Health to improve their systems.
“What we’ve learned is that there are small groups of people that brand changes don’t succeed – for whatever reason – and we want to create mechanisms to ensure that people can stay on their brands. previous ones. “
For Hume, the big win was the Health and Disability Commissioner who asked the Department of Health to help design a new system for brand changes.
“Hearing that someone is actually listening and is ready to say ‘hey, we actually gotta do something’ is huge. We actually have someone supporting us rather than saying ‘no, it’s all in your head – go away “.”
This problem will not go away for a while. The government has just launched its own Pharmac review, which includes rebranding research, and the Chief Coroner is due to report in the coming weeks.
A spokesperson for the Department of Health said he was considering how best to deal with the commissioner’s recommendations and that they may be included in the government review of Pharmac.