The patients asking for medicinal cannabis

Stuff co.nz 24 October 2015
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. Jack Fletcher reports.

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.

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 more widespread 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 cannabis-derived drug available in New Zealand is Sativex, and access to it is heavily 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, “and I just didn’t have that money.”

Medicinal cannabis comes as pills, sprays or skin patches. They are designed not to give the “high” people get from illegal marijuana.

Of the 500 or more active ingredients in cannabis, most cannabis-derived drugs use cannabidiol, or CBD, a non-psychoactive 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 regulated. Patients using the drugs won’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 packet to be given to the Ministry of Health, along with an application for Sativex signed by the family’s GP and Paige’s specialist.

Within two weeks, the application was approved and Paige became the first child in New Zealand to be 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”. California was the first in 1996, and some 250,000 people in the state now have a dispensation to smoke cannabis. That system has been much-criticised; the state has passed new laws to control the cultivation, transport and sale of the medicinal drug.

A leading activist in the field in New Zealand 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.”

Matich 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 of Health  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.

“Cultivating, manufacturing and extracting products to a pharmaceutical standard is a pretty huge undertaking and an expensive one.”

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.’

“New Zealand needs to get on board and start doing some research.”

Dunne says he would be very happy for trials of medicinal cannabis to take place in New Zealand.

If planned trials in Australia of Epidiolex got positive results, he says, that could open the way for the use of the drug in New Zealand.

There have been promising early results from American tests using the marijuana-based drug with young people with severe epilepsy.

In 1964 an Israeli organic chemist Raphael Mechoulam first identified and isolated the main active ingredient of cannabis, the now well-known tetrahydrocannabidiol, or THC.

In 1986 Mechoulam said 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”.

Mechoulam’s research led to the discovery and isolation of  THC, the main active ingredient in cannabis.

If New Zealand is able to get a better handle on the science and therapeutic effects of CBD and THC, Matich said, the stigma that lingers 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.”

Matich hopes a national 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.”

Matich wants more education about the issue.

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.”

Guest said 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.

Russell Wills disagrees. “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 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.

WHAT IS MEDICINAL CANNABIS?
The Ministry of Health says the term “encompasses several types of products containing extracts of the cannabis plant that may be used to treat various medical conditions”.

That doesn’t mean the plant itself, though – the ministry takes pains to point out that the Government does not support the use of “cannabis leaf or flower preparations for medicinal use”.

Instead, ministerial approval can be considered for three types of products – pharmaceutical-grade drugs that have been ticked off by Medsafe, those that have been trialled overseas but don’t have consent here yet, and products that don’t meet pharmaceutical standards at all, and might not even be medicines.

Other countries use the term differently. “Medical marijuana” in the United States, for instance, usually means the voter-backed laws that have allowed patients in many states to smoke the plant (most famously in California, where some 300,000 people now have that dispensation).

Most medical research, in any case, focuses on pharmaceutical refinements of the plant. The first such drugs were produced in the 1980s without much effect, but now research is gathering pace.

There are early signs that cannabis derivatives can help treat the effects of neurological disorders such as multiple sclerosis and motor neurone disease, some forms of epilepsy, nausea and vomiting, “wasting” associated with HIV and cancer treatment, and chronic pain.

The influential Mayo Clinic in the US says cannabis offers the “possibility of many promising pharmaceutical applications”, many yet to be understood.

The sole cannabis-derived medicine currently approved for prescription in New Zealand is Sativex, an oral spray that can help improve the symptoms of multiple sclerosis, and may have other applications. Pharmac is currently considering funding the drug.

Epidiolex, a pure liquid formulation of cannabidiol (CBD), one component of cannabis, is another promising treatment. It is undergoing clinical trials in the US after the high-profile success of such products in helping with seizure disorders in children.

Another treatment sometimes called “medicinal cannabis” is Elixinol, which was given to Nelson teenager Alex Renton earlier this year after being approved by associate health minister Peter Dunne. However, University of Auckland pharmacology department head Michelle Glass points out that it was an “oil made from industrial hemp, which is not marijuana”.

So “medicinal cannabis” is a blanket term covering a range of treatments. The laws around how their approval are not simple: because of cannabis’ status as a Class B1 controlled drug, they often require the minister’s personal intervention.

The psychoactive properties of the drugs also vary and can be in some dispute. For example, Sativex, the spray approved in New Zealand, “may produce side-effects that are interpreted as a euphoria or cannabis-like ‘high’,” according to Medsafe.

However, the drug’s manufacturer, GW Pharmaceuticals, says “there is no evidence from Sativex clinical trials that patients obtain a high similar to that sought by recreational cannabis users”.
http://www.stuff.co.nz/national/health/73299908/The-patients-asking-for-medicinal-cannabis?cid=app-iPhone