301020aw02.JPG 301020aw03.JPG This is how much money the Jefferies family has spent on medicinal cannabis for their daughter in five years. Photo / Andrew Warner
301020aw04.JPG CBD oil is publicly available and medicinal cannabis is available on prescription. Photo / Andrew Warner 301020aw03.JPG
Zoe Jefferies' parents often wonder what their daughter's life would have been like if she'd been given medicinal cannabis earlier.
The 12-year-old started using the drug five years ago and her Rotorua parents, Karen and Adam, describe her improvement as a "game changer" - despite it costing them more than $35,000.
But Zoe's still unable to walk or talk and has little quality of life - something which they say could have been different if medicinal cannabis was freely available since her birth.
New Government data shows the number of people getting prescribed medicinal cannabis jumped by 84 per cent in the first six months of this year. In the Bay of Plenty, there are now 147 people prescribed the drug out of a total of 1842 nationwide.
Zoe suffers from uncontrolled epilepsy, spastic quadriplegia cerebral palsy, microcephaly and cerebral visual impairment. She has between 10 and 80 seizures per day.
The Jefferies say medicinal cannabis has drastically reduced the number of seizures she suffers and every seizure, particularly when she was a baby, caused damage.
"I wish every day that this medication was available when she was a baby and I wonder how different things would have been," Karen Jefferies said.
She was glad more people were now getting subscriptions.
"But it breaks my heart that it's still so expensive and it's still not as accessible as it should be."
The Jefferies spent two years fighting to use the drug following their own research and finally got approval in 2015.
Since Zoe started taking half a millilitre twice a day, she slept through the night without having seizures for the first time.
It's been a massive financial sacrifice, costing them $28,350 for the Sativex medicinal cannabis over the years. That equated to $1050 for three 10ml bottles which would last up to six weeks.
They have now switched to a cheaper version, called Medleaf, and have spent more than $8590 on it so far. The cost broken down is $445 for two 10ml bottles, which last them about a month.
Adam Jefferies set up a business called Artzy Giftzy where he uses his talent making balloon creatures at children's birthday parties or balloon bouquets for adults, and all proceeds go towards funding Zoe's medicinal cannabis.
Meanwhile, Karen Jefferies said their life revolved around doctors and hospital appointments and treatment sessions to give Zoe the best life they could.
"She creates a lot of paperwork and people to deal with so we are very much fulltime caregivers," she said.
They tried to have the best parent-child relationship as they could but, as she got older, it became harder as equipment always got in the way of having close interaction.
They can no longer hold her or lift her without a hoist or harness, and her life is scheduled to specific timelines.
When you ask them about Zoe's future, they say they know the realities.
"We were told she wouldn't live past 24 hours so we live each day as it comes. We aren't stupid though ... Her life isn't the easiest," Karen Jefferies said.
"We know it will come some day, we just don't know when," Adam Jefferies said.
The latest Government data on cannabis subscriptions was compiled and analysed by a group of doctors at the Cannabis Clinic, whose medical practice is the country's largest prescribe of medicinal cannabis.
Out of the Bay of Plenty's applications, nearly half (47 per cent) were for conditions which cause chronic pain - higher than the national average of 27 per cent.
In the Bay of Plenty, 11 per cent of applications are for mental health conditions, 14 per cent for sleep, 15 per cent for digestion, 6 per cent for cancer, 4 per cent for neurological issues and 2 per cent for skin complaints.
More than a third (37 per cent) of applications for prescriptions originate from patients in the Auckland region, with Cantabrians and Wellingtonians making up a further 11 per cent each. Waikato patients make up 9 per cent and Otago 6 per cent.
Medicinal cannabis use is heavily regulated in New Zealand. Under regulations made under the Misuse of Drugs Act and Medicines Act, every prescription for medicinal cannabis written by a doctor must be notified to the Government.
Government figures show that prescriptions for medicinal cannabis have increased from 1002 in January this year to 1842 by July.
Cannabis Clinic spokesman Dr Waseem Alzaher said the stigma associated with medicinal cannabis might add further stress to patients already living with a range of mental health conditions.
"What is not commonly understood is that there is a significant level of stigma associated with medicinal cannabis to the point that we have referrals from other GPs who want to help their patients but do not want to be seen prescribing it for them," he said.
"Our concern is that, for the thousands of Kiwis living with mental health conditions who find relief from their symptoms, the additional stigma in society may only represent a further challenge in their daily lives," he said.
"We have also had the demand for our services skyrocket since Covid with many more Kiwis experiencing mental health issues and a large number of patients who have had their surgeries postponed and who have to deal with chronic pain.
Dr Alzaher said New Zealand was behind other international markets such as the United States and Canada where medicinal cannabis was seen as more of a wellness product.