Epilepsy patients are upset about a Pharmac-funded video which they say downplays the side effects of a drug that's been linked to four unexplained deaths.
Pharmac has backtracked on its decision to make Logem the only funded anti-epileptic drug available.
Epilepsy patient Jack Anderson's health began deteriorating rapidly in August, unaware that his epilepsy medication had changed to Logem in a Pharmac brand switch.
“I was having tonic clonic seizures, the ones where you collapse. I hadn’t had those in so long,” Mr Anderson said.
“I started getting them in my sleep. I’d wake up in the morning, tongue bit and feeling it.”
After losing his job and flat, Mr Anderson went back to his old meds, Lamictal.
“Within two weeks, everything was back to normal - or, at least, almost," he said.
Following the ordeal, Mr Anderson was left surprised after he received a text this week inviting him to take part in a university study on a brand switch, offering information and participation in an online survey.
He agreed, and soon got a link to a Pharmac-funded video which had made repeated references to the “nocebo effect”, which “occurs when you switch to a new brand and are naturally on the lookout for side effects or symptoms that you wouldn't normally pay attention to,” according to the video.
Mr Anderson called the video “offensive”.
“I’d been struggling through this and it was physical signs, it wasn't in my head."
"There are people suffering,” Mr Anderson’s partner, Natasha Easey, said.
“There ares people that are having some real reactions and then to just brush it off as a ‘nocebo’ is insulting.”
Pharmac said the study and video is part of research which has received ethics approval.
It also confirmed it’s spending $73,000 on two University of Auckland studies looking into the effects of brand switches. They said the purpose of the Logem study is to foster positive acceptance of the change.
While the video was pulled within hours and research has ceased in the context of significant public concern, lawyer Phillip Cornege is questioning the timing of the project.
“In circumstances where there have been recent deaths linked to the switch, albeit unproven, it shows a degree of insensitivity,” Mr Cornege said.
“It makes me angry, not just for myself, but for others that are going to be confused,” Mr Anderson said.