Desperate for a ... marijuana MIRACLE
Medicinal cannabis hit the headlines when dying union boss Helen Kelly revealed she was taking illegal cannabis to relieve pain. Thousands of other Kiwis say they need cannabis too.
HUHANA HICKEY has multiple sclerosis and has been in a wheelchair since 1996. She is in pain every day. ‘‘I’m on tramadol, morphine, Paramax and codeine.’’ The medicines she takes for her condition make her tired, so now she has weaned herself off most of them.
‘‘I’ve had to come off it, but I got all the withdrawals.’’
Hickey, 53, a researcher in Maori health at AUT University, is still taking three tramadol, a strong painkiller, every day, and says ‘‘the pain is huge’’.
‘‘The tramadol gets me through that bad time and then I get on with it.’’
‘‘I’ve got a headache today, I know I’m going to be exhausted tonight, and I know that I’m going to need to take some morphine just to have a break from the pain tonight.
‘‘I don’t like it, I don’t want to, but I have to, because there isn’t the alternative.’’
The alternative, Hickey says, is cannabis. Her doctors have told her medicinal cannabis could help.
‘‘They are all in favour of it, my neurologist, my pain specialist, they all want it to be legal,’’ Hickey says.
There are thousands of New Zealanders in Hickey’s situation. Perhaps the most prominent is former CTU president Helen Kelly, terminally ill with lung cancer.
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This month she revealed she takes cannabis oil to relieve the pain. She had exhausted all legal pain relief.
‘‘It just seems absolutely insane that I’ve got no idea what I’m taking, how much I should take or how it’s manufactured,’’ she said.
Other countries allow patients access to medicinal marijuana, Kelly said. ‘‘We should stop being a fishing village.’’
There is now a powerful lobby seeking wider public access to medicinal cannabis. It includes Children’s Commissioner Russell Wills, a paediatrician, who saw a dramatic change in one patient with intractable epilepsy after she got access through her mother to cannabidiol (CBD) oil.
‘‘The child had a 50 per cent reduction in seizures as well as a substantial improvement in quality of life,’’ Wills told The Dominion Post.
Patients report that cannabis and medicinal cannabis not only relieve pain and stop seizures, they can transform their quality of life.
But Wills – and the Government – are cautious. The science of medicinal marijuana ‘‘is still in its infancy,’’ says Wills.
ASSOCIATE Health Minister Peter Dunne says the issue is about giving people ‘‘access to a high quality, pharmaceutical product that is safe, reliable and that will alleviate their ailments’’.
There are moves now to begin observational trials of patients using medicinal cannabis in New Zealand by the end of next year.
At present the only cannabisderived drug available in New Zealand is Sativex, and access to it is restricted. To get a prescription for their patient, a doctor and a specialist must apply to the Ministry of Health, with Dunne making the final call.
Hickey has been approved to receive the drug, an oral spray, but it is enormously expensive.
‘‘When the script arrived I took it to the pharmacy and they wanted $1400,’’ she says. ‘‘I just didn’t have that money.’’
Medicinal cannabis comes as pills, sprays or skin patches. They are designed not to give the same ‘‘high’’ people get from using marijuana. Of the 500 or more active ingredients in cannabis, most cannabis-derived drugs use cannabidiol, or CBD, a nonpsychoactive ingredient (it gives no high.)
Many cannabis-derived drugs also contain THC (tetrahydrocannabidiol), the psychoactive substance which creates the high.
The ratios of CBD and THC are strictly calibrated, to try to ensure patients using the drugs don’t get stoned.
Paige Gallien, 12, was the first child to be prescribed Sativex, and her father Brent says it meant he was finally able to see his real daughter.
‘‘It was as if she was always in there, but she was trapped by all the seizures. It let her clear her mind and start learning and showing what was in there.’’
Paige suffers from a rare and severe form of epilepsy called Dravet Syndrome, which means she can have as many as 15 seizures a night, as well as almost constant involuntary muscle twitches, or myoclonic jerks.
Brent had heard about Charlotte Figi, a girl in the United States who has the same syndrome as Paige, whose family saw an ‘‘incredible’’ change in Charlotte’s quality of life once they started treating her with cannabis oil.
Brent put together an information pack for the Ministry of Health, along with an application for Sativex signed by the family’s GP and Paige’s specialist. Within two weeks, it was approved and Paige became the first child in New Zealand approved for Sativex.
‘‘We gave her the spray, and within two days of giving it to her, she dropped to having one or two seizures a day. It was like black and white.’’
Paige started going days without seizures, 10 days at one stage, something her parents hadn’t seen for over six years.
‘‘Our specialist here in Hamilton is overjoyed, just absolutely rapt.’’
Brent explains that without generous support from a local group who fundraise for good causes, they wouldn’t have been able to afford the medication.
The campaign for access to medicinal cannabis started decades ago, but collided with certain political realities. The debate over recreational use of the drug is stalemated, with passionate argument on both sides.
Moves to legalise marijuana in New Zealand have all failed. However, medical use of cannabis is legal in a number of countries, including Austria, Canada, the Czech Republic, Finland, Germany, Israel, Italy, the Netherlands, Portugal and Spain.
The Australian state of Victoria is legalising the use of medicinal cannabis in exceptional circumstances such as cases of chronic pain, multiple sclerosis, or epilepsy. New South Wales has trials in the works, as well as a new scheme to allow terminally ill people to escape prosecution if they smoke cannabis.
And 23 US states now have laws of one kind or another to allow ‘‘medical marijuana’’, mostly referring to smoking the plant.
A leading New Zealand activist in the field is Toni-Marie Matich, CEO of United in Compassion NZ (UICNZ), a group wanting better access to medicinal cannabis and more research.
The group has a database of over 6500 New Zealanders wanting access to medicinal cannabis, many of whom end up using illegal means to get the drug.
‘‘We want people to have safe access, we don’t want people going out into the black market and purchasing cannabis,’’ Matich says. ‘‘We want them to be able to go to their doctor and have a discussion.’’
She is hoping that, through negotiation with the Ministry of Health, UICNZ is able to start trials of medicinal cannabis products in New Zealand.
She says her group has lodged an application with the ministry to begin ‘‘compassionate observational trials’’ by the end of 2016.
‘‘The two biggest groups in the trials would be chronic pain and intractable epilepsy [sufferers], and we would look at importing products from the US,’’ Matich says.
She says she has sat down with Dunne many times to discuss creating a viable medicinal cannabis system in New Zealand.
‘‘He listened to what I had to say and considered where I was coming from,’’ she reports. ‘‘We have a mutual respect.’ Dunne says he would be very happy for trials of medicinal cannabis to take place in New Zealand, but the government will only have an oversight role.
‘‘The question here is not, ‘Can you?’ but rather, ‘Is anyone interested in running trials?’ ’’
If planned trials in Australia of Epidiolex receive positive results, he says, that could open the way for the use of the drug in New Zealand.
Yet Dunne also says the drugs may turn out to be less widely applicable than patients hope.
‘‘President Obama’s drugs chief, Michael Botticelli, told me in a meeting in Vienna in March that their assessment was that, in the United States, medicinal cannabis products were probably likely to benefit about 200 patients only.’’
IN 1964, Israeli organic chemist Raphael Mechoulam first identified the main active ingredient of cannabis, the now well-known tetrahydrocannabidiol, or THC.
Two decades later, he suggested that ‘‘extracts of the cannabis sativa can cause a variety of medicinal effects unrelated to its psychoactive properties’’. These effects, he said, had been recognised since the third millennium BC, when ‘‘Chinese texts described its usefulness in the relief of pain and cramps’’.
If New Zealand is able to get a better handle on the science and therapeutic effects of CBD and THC, Matich says, the stigma around medicinal cannabis can be broken.
‘‘It is all about education, and it can’t just come from the grass roots level, it needs to come from government.’’
Matich wants more education about the issue. ‘‘There is currently no education at a medical level, so doctors cannot support patients simply because they do not understand the possible medicinal benefits.’’
She hopes a symposium of international experts organised by UICNZ in Wellington next year will help.
‘‘I hope that it would bring about more understanding and prompt a discussion.’’
For one family, the inability to get access to the best medicine for their daughter led them to Colorado, which has become a refuge for families in search of medicinal alternatives.
Jessika and Brendan Guest moved to New Zealand with their young family in 2013. Their seven year old daughter Jade has had epilepsy since birth, and has been on heavy doses of medication since she was three months old.
Guest said they tried many different medications over her daughter’s life, most of them failing with some even causing more seizures.
‘‘I felt as if Jade was a guinea pig for the neurology team. If I was to tell them that her seizures increased, the medications would increase.’’
The medication did not always alleviate all of her seizures, and often made her drowsy and irritable.
‘‘I couldn’t see my daughter in her little body. I just wanted to pick up Jade and run away, let her live her life without medications for once and enjoy some quality of life.’’
It was then that Guest learned of medicinal marijuana for epilepsy, and decided to move her family back to Colorado where treatment was available.
Treating her daughter with a combination of high THC strains of marijuana in an oil form, Guest says the changes in her daughter are transformational.
‘‘Her physical and cognitive abilities have improved. I’ve taken away the straps on her chair that were custom made for her to keep her from falling forward, because now she chooses to hold herself up and not rely on them.’’
Brendan has had to stay in New Zealand for work, and Guest said this has been hard for the family.
‘‘Brendan is missing out on these changes with Jade, and our son is growing up so fast. These are moments that he can never get back.’’
So the Government faces an articulate lobby on behalf of a large group of people in chronic pain who have already found much-needed relief either from medicinal cannabis – or the drug you find on the street.
They want to know: why is the Government dragging the chain?
Some say the Government is frightened of the political storm that greets any party that is ‘‘soft on dope.’’ Others blame the bureaucrats.
Peter Dunne says neither is the case, and the politics of legalising cannabis have no bearing here.
‘‘I think too many other groups have used the medicinal issue as a smokescreen for the wider agenda of legalising the cannabis leaf.’’
Russell Wills says the process is sound. ‘‘The minister and Medsafe are well-briefed. They are up with the science, and have talked with international authorities.
‘‘This is not a case of bureaucratic delay. This is very cautious and appropriate conservatism about access to effective medicines that are safe.’’
That still leaves some tough choices for patients whose medicines aren’t helping much and who think cannabis might. They can ask for help from Peter Dunne and his officials. Or they can hit the street.
It just seems absolutely insane that I’ve got no idea what I’m taking.
Helen Kelly