Government regulations and costly prices have led one family to turn to off label cannabidol oil to treat their daughter's epilepsy.
Seven weeks ago you wouldn't have recognised Hollie MacCullaich.
From the age of six-months-old the Auckland toddler has suffered brain damaging epileptic seizures.
“She was grey… it was absolutely terrifying,” says mum Heather describing her daughter's first attack.
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The seizures became a weekly occurrence for the family – who could do nothing but comfort their daughter as the convulsions lasted for over an hour.
“After you hit the twenty minute mark thats when brain damage occurs… and Hollie has had over a hundred seizures that has lasted longer than that,” says Heather.
Each time the fits struck they would destroy newly formed connections in Hollie's growing brain.
“She was stuck at 6-months-old,” says her father Frank.
“She was effectively a walking zombie.”
Hollie was given an array of medications on the highest dosage available – which cut the number of attacks in half.
But they also came with serious negative side effects, that included liver scarring, delayed development and possible birth defects later in life.
But it was when her specialist suggested putting her on clobazam that the family decided to look for alternatives.
“I said well what about CBD?”
Cannabidiol or CBD, a compound found in Marijuana, has been gaining popularity as a future treatment for drug-treatment epilepsy in recent years.
Clinical studies have shown it is effective in reducing the number of seizures experienced by patients with minor side effects.
Hollie's family were able to get a prescription to buy or import the drug – but they hit a snag.
Under current New Zealand regulations CBD medicine isn't funded by Pharmac.
Not only that – but any CBD medicine that is imported must meet strict criteria that includes containing no more than 2 per cent tetrahydrocannabinol [THC] and other psychoactive related substances.
There are a few pharmaceutical companies in New Zealand and abroad that make CBD medicine like this.
But according to Frank “it is extortionately expensive.”
“It was going to cost at least $600 per week.”
“Your average Kiwi cannot afford that.”
Frank says it's the 2 per cent limit on THC that makes it so expensive.
“If you were to change that… to even something like 3 per cent, the price drops dramatically.”
So after doing some research Frank says that's exactly what they did, importing a product that was 3 per cent THC, that they believed was safe and less than half the price.
And after seven weeks the family says the results have been astonishing.
“We've seen a complete transformation.”
“She's interacting with the world, she's trying to talk, she engages with you looking into your eyes, she grabs anything she can get her hand to.”
“She's now present in the world instead of just existing.”
Whats surprising is that Hollies seizures haven't stopped – in fact they've increased.
“But now they're all under twenty minutes,” says Frank.
“See the seizures aren't the problem – it's the brain damage that comes with it.”
“And that's gone.”
However experts warn against the dangers of using an off label CBD product to treat a medical condition.
Researcher Associate Professor Lynette Sadleir was part of a multinational study using CBD to treat children with Dravet syndrome.
She says that CBD has been shown to be an effective treatment for epilepsy, but THC has been shown to actually increase chance of seizures in high-dose animal studies.
“And studies suggest that [THC] will also have a negative impact on the developing brain.”
She also warns that many companies producing CBD have been known to mislead their customers about the actual content.
“If something's not pharmaceutical grade you actually don't know how much of anything is in it.”
Medsafe Group Manager Chris James says that the current regulations limiting THC to 2 per cent was part of a recommendation by the Expert Advisory Committee on Drugs.
“The EACD considered that low levels of impurities found in some CBD products are not clinically significant and the scheduling entry should reflect this by allowing other cannabinoids that are naturally found in cannabis, up to 2 percent.”