Medicinal cannabis petition presented

A medicinal cannabis petition was presented to parliament today.

RNZ: Alex Renton’s mum presents reform petition to Parliament

A woman whose son died of severe epilepsy has presented a petition with more than 15,000 signatures to Parliament, urging the government to make medicinal cannabis more readily available.

Rose Renton’s 19-year-old son Alex Renton died in Wellington Hospital last year, after suffering from status epilepticus – an acute, prolonged epileptic seizure.

Part of his treatment before his death was medicinal cannabis, which Mrs Renton said provided him with some relief, but was given to him too late.

A report by Wellington Hospital specialists said the oil had no effect on his underlying seizures, and medical staff never saw any improvement.

There’s a range of products becoming available and it was a gamble that the one chosen may make a difference. There was no time nor any easy ability to try alternatives.

But Mrs Renton said Alex had died peacefully.

“A lot of those drugs that were so heavily layered over the months leading up to his death were taken off and drastically reduced and the [cannabis] oil doses were increased.”

The process to acquire the oil and get approval to use it was drawn out and far from easy, Mrs Renton said.

Medicinal cannabis was only granted after a long battle with medical staff for backing, and after 43 other drugs had failed.

Keeping pressure on Parliament, along with overseas moves to more freedom to use medicinal cannabis overseas, may eventually get our Government to move with the times and for the needs of people who suffer.

 

Alex Renton dies

Very sad to hear that Alex Renton died yesterday. Prior reports had been of improvement as he was gradually allowed to come out of a drug induced coma as cannabis oil treatment increased.

His family posted on Facebook – Support for Alex’s Journey – last night:

This evening our beautiful warrior Alex passed peacefully away. He was surrounded by his family, listening to his own music with a tummy of mums food. We thank you all from our hearts as you kept us strong during this journey. His spirit is amongst us all as he taught us so very much. We love you dear Alex (aka Ratty) xxxxxxx

Two days earlier (June 29) they had posted:

Alex is holding his own maintaining his own breathing! He shows courage, strength and fortitude as he battles towards better health. Keep prayers flowing. We are now feeding Alex our own meals with support from Hospital. This continues to be the most challenging event of our lives as a family, support around NZ is incredible, thank you xx. Rose

Stuff reports Nelson teenager Alex Renton dies despite treatment with medical cannabis.

Alex, 19, has been in hospital since April 8 in “status epilepticus”, a kind of prolonged seizure. It was not known what caused the seizures.

He had been put in an induced coma and his family petitioned the Government to allow him to be treated with a medicinal cannabidiol oil, Elixinol. They gained national support and Associate Health Minister Peter Dunne approved it to be used last month.

Alex was given his first dose of the oil on June 16, after it arrived from America.

His sedation medication treatment was reduced and he regained consciousness and his seizures stopped in that first week.

There will possibly be an inquest into Alex’s illness and death to explore the complex medical issues involved.

Dunne: find a doctor who is open to medicinal cannabis

Peter Dunne has been reported as effectively encouraging patients wanting to use medicinal cannabis to find a doctor who will consider this in their interest.

This is in Mum desperate for medicinal cannabis for her sick son:

Associate Minister of Health Peter Dunne has made it clear to GPs and the Medical Association that conservatism about using medicinal cannabis isn’t always in the best interests of their patients.

If a doctor wasn’t open to medicinal cannabis then families had the option of finding another doctor, he said.

“I’m not going to encourage or discourage that because it’s not my role, but it’s an option for them to consider.”

This looks like a carefully worded but significant statement from Dunne. This was in response to discussion about other parents wanting to try medical cannabis for their children because other drugs weren’t helping and follows the approval of the Ministry and Dunne to allow Alex Renton to be treated with Elixinol.

His family’s fight to get doctors to apply to the Ministry of Health has triggered another mother, Julie Dixon, to share her experiences battling for CBD for her son, Matthew.

The Christchurch 27-year-old has suffered from refractory epilepsy since he was aged 3 and has spent much of his life in and out of a hospital.

“We’re desperate,” Dixon said.

Matthew’s seizures are uncontrolled by medication and he too has spent time in hospital in an induced coma.

The Government allows oral treatment of a drug called Sativex, which contains cannabis extracts that include CBD and requires ministerial approval.

When Dunne approved Elixinol for Alex Renton it was the first time that particular product had been approved.

“The last time we visited the specialist we asked about Sativex and the doctor’s response was, why would you want to try that when it hasn’t been proven to work,” Dixon said.

“For us there is an absence of any other treatment options. We are regularly advised there is nothing left.”

Dixon said doctors have never discussed anything outside of conventional treatments with her and it was only when she started doing her own research she came across Sativex and Elixinol.

She and her husband, Kelvin, have written to Dunne asking for approval but without the support of Matthew’s doctor, Dunne is hamstrung by the procedure, which isn’t one he plans to change.

“At the end of the day cannabis oil is just another drug – no different from the powerful drugs being used to keep Alex comatose and the powerful drug that our son Matthew takes every day of his life, which does not control his seizures,” she said.

And Dunne seems to be following these cases and recognises the difficulties the families are having with treatments.

While Dunne said he had considerable sympathy for the families involved, “I’m not a clinician and I’m not in any position to override the clinical judgment.”

But he is open to broadening access to medicinal cannabis despite Prime Minister John Key saying he wouldn’t support a parliamentary debate on the matter.

“We are watching closely the trials that are being undertaken in Australia. Essentially if they prove to be effective we would obviously seek to take advantage of them in New Zealand.

“But the real issue beyond that is manufacturers being prepared to make those drugs available, in some cases they’re not interested because they don’t see the market as big enough.”

For it to go beyond a case by basis a manufacturer would have to apply for interim or general approval of use of their products here.

Perhaps the New Zealand market isn’t big enough – but if a manufacturer had their products approved in the New Zealand market and proved their worth here that would do a lot to help them establish wider markets.

Pressure on Dunne – another mother wanting medicinal cannabis

There is pressure on Peter Dunne with another mother applying pressure to be able to use medicinal cannabis to treat her 7 year old daughter.

The Rotorua Post (via NZH) reports: Hope for Zoe in cannabis oil

Zoe has neurodevelopmental disorder and refractory seizure disorder, due to her brain being deprived of oxygen during birth.

Mrs Jeffries said doctors had given her 24 hours to live but, seven years on, Zoe was still fighting. “It’s the ups and downs that make it hard. You can only live each day as it comes … As a family, we are extremely happy Mr Dunne has shown considerable compassion and approved the use of Elixinol for Alex (Renton).

“In regards to Zoe, she has had a list of seven pharmaceuticals to trial this year. There is one left to try and she still continues to have hundreds of seizures daily”.

Dunne has made it clear that approval for Alex didn’t set a precedent:

Mr Dunne stressed the use of Elixinol in Mr Renton’s situation wasn’t a precedent and shouldn’t be seen as a “significant change in policy”.

But that is contradicted.

Mr Dunne said doctors had been able to apply for medicinal cannabis products for many years but it was the first time that avenue had been used for that product.

More products are available now, and more testing is being done, and more anecdotal evidence is becoming available. And there’s quite a bit of research pending.

What Mrs Jeffries will need to do is apply to the Ministry for approval to use a product.

Ministry of Health advice was “50/50 saying that there’s no compelling evidence that this product will work. On the other hand there’s no compelling evidence it will do significant damage to him”.

She needs to show that there is reasonable evidence the product might work, and that there is no compelling evidence it will not do any damage to Zoe.

Ideally approval for the product in general can be obtained to save parents from going through procedures and more stress.

It will help if more doctors and specialists ask for these relatively safe products too.

Mrs Jeffries said UICNZ was working constructively with the Ministry of Health to change that. “We hope to be able to implement a methodical regime here in NZ. Ideally compassion for one can equate to compassion for all in need.”

” Zoe is my inspiration for becoming a trustee with United in Compassion NZ (UICNZ), a sister branch of the Australian organisation who worked with Rose Renton on Alex’s case. As a non-profit we are working towards the goal of medical cannabis in NZ, and doing so from an angle highlighting education, compassion and logic.”

UICNZ now has charity status and has set up a Givealittle page to raise funds. For more information visit unitedincompassion.org.nz/2015/06/13/united-in-compassion-is-officially-registered-and-seeking-donations/

Karen Jeffries is far from the only parent desperate for something that will effectively treat their child.

Cannabis treatment concerns

Cannabis oil treatment has been approved for Alex Renton after having a severe seizure and a subsequent two month coma.

Cautious concerns have been expressed by experts about the cannabis product approved as it is virtually untested in this situation, and it has more of an industrial background than a medical background.

One expert says “this is uncharted territory”

The biggest concern is for Alex’swell being, and whether any cannabis oil treatment will help him. We have to hope.

It will have been an awful and very stressful time for Alex’s mother (and sister). Any mother in her position would be desperate for something to help her son. She has pushed hard for approval for alternate treatment, as nothing the hospital could do seems to have worked.

But what is going to be tried now has virtually been untested, and some concerns have been expressed about the particular product that has been chosen and approved. It’s a risk – but any new treatment would be a risk, and doing nothing would also be a major risk.

There’s been a post on this at the Science media Centre: Cannabidiol as a seizure treatment – Expert reaction where they ask:

Health authorities have approved the use of hemp derived medication Elixinol – on a one-off basis – to treat a coma patient suffering ongoing seizures. But does it work?

I don’t think anyone knows whether it will work.

The drug was approved on compassionate grounds by Associate Minister of Health Hon Peter Dunne, to be administered by clinicians treating Wellington patient Alex Renton.

The Minister said that  “despite the absence of clinical evidence supporting the efficacy of CBD in patients with Mr Renton’s condition status epilepticus, my decision relies on the dire circumstances and extreme severity of Mr Renton’s individual case”.

The Science Media Centre contacted New Zealand experts for comment.

There is a lot of interest in what is happening with Alex and whether cannabis products will help or not.

Dr John Ashton, Senior Lecturer, Department of Pharmacology and Toxicology, University of Otago, comments:

“There is some evidence that enriched CBD oil may help reduce seizures in specific kinds of hard-to-treat childhood epilepsy, but much of this evidence is anecdotal, and relies on parental reports. Controlled experiments have yet to be completed, though one product “Epidiolex” which is 98% CBD and produced by GWPharmaceuticals (who also make Sativex) is showing promising interim results in an ongoing experiment.

“However, there is no evidence that CBD can treat status epilepticus nor encephalitis, so this is uncharted territory. Also, the product Elixinol is an industrial hemp oil product, not from medicinal cannabis; hemp and medicinal cannabis are distinct variants of the same species. Elixinol only has 18-19% CBD, and contains a range of other compounds, and has not been tested in any kind of seizures under controlled conditions.”

So there is no evidence that the product, Elixinol, has had any beneficial effect for the type of seizure Alex has had. A significantly different product, Epidiolex, “is showing promising interim results in an ongoing experiment”.

Assoc Prof Michelle Glass, Head – Department of Pharmacology, University of Auckland, comments:

“The reports that we have seen in the media today strongly imply that the government has approved cannabis for the treatment of Alex Renton, it is important that people recognise that this is not the case.  What has been approved is oil made from industrial hemp, which is not marijuana, it is not a drug that will make the user experience any of the “high” generally associated with cannabis based products.  Instead, these are plants with a very high fibre content and a negligible THC content (less than 0.2%).  THC is the component of cannabis that generates a high.

“The use of high cannabidiol (CBD)  strains of cannabis or hemp have recently garnered a lot of public attention, particularly in pediatric seizure disorders such as Dravets syndrome, where there have been some dramatic results in individual patients (see the media coverage around Charlottes Web).  The strength of these individual results was such that the FDA awarded a pharmaceutical preparation of CBD – Epidiolex (from GW pharmaceuticals) orphan drug status, helping to drive the progress of clinical testing.

“These larger scale clinical trials are currently underway, and early reporting of the initial results looks very promising, with good seizure control being achieved and the drug being well tolerated, but it’s important to note that these are still in quite low numbers of patients (around 150) and a limited number of seizure disorders, meaning it is difficult to generalise at this stage.

“The compound that has been approved for Alex Renton is not Epidiolex which is a pure 98% CBD oil – but Elixinol, this is reported on the manufacturers web site to be 18% CBD hemp oil, which to the best of my knowledge has never been tested in clinical trials – however, there are some anecdotal reports of similar products proving useful in seizure disorders.  There is even a suggestion from animal studies that less pure products with a range of plant based cannabinoids in them might be preferable to a highly pure product.

“This is really a tragic case, and given that this is a compound which appears to be well tolerated, it is certainly worth a try, we can only hope in the future that there will be stronger clinical evidence as to what composition and dose of medicine is most likely to succeed.”

So the use of CBD for Alex looks like a bit of a medical punt.

And the particular product approved is also a punt.

As nothing else has worked for Alex then trying anything is probably better than nothing, as long as the risks are relatively low and that would seem to be the case here.

If Elixinol works and Alex’s condition improves that would be great, but there will be no way of knowing whether it was the best product to use or not. A different cannabinoid may have had more or less effect. There’s little way of knowing.

Epidiolexis mentioned above.

If there is no improvement then it will leave many questions unanswered. It wouldn’t prove that Elixinol was ineffective in general as it’s possible Alex’s condition is simply untreatable. And it wouldn’t prove that cannabinoids wouldn’t help Alex.

If Elixinol has no effect on Alex, or has little effect, then perhaps an alternative like Epidiolex could be tried to see if it is more effective for him.

Another product that’s been suggested is from StateWide Dosed Medicines.

This all seems like hit or miss experimentation, and that’s pretty much what it is. Nothing else has worked for Alex so there seems little to lose – CBD could have an adverse effect but so could any other treatment.

It seems to be a risk worth taking – if Alex was my son I’d want to try anything that gave me hope of success.

I hope that the medical advice behind the decision to try Elixinol is sound – there are criticisms of this product online.

And I hope Alex gets better. It would be a major for him and his family, obviously. It would also be significant in the use of CBD as a treatment for seizures.

Dunne approves medicinal cannabis for teen in coma

Just breaking –

Assoc Health Minister Peter Dunne has approved cannabidiol (medicinal cannabis) for Alex Renton

Good news for Alex and his family.

Minister approves one-off use of Cannabidiol product

Hon Peter Dunne
Associate Minister of Health

9 June 2015

Minister approves one-off use of Cannabidiol product ‘Elixinol’

Associate Minister of Health Hon Peter Dunne has today approved on compassionate grounds the one-off use of Elixinol, a cannabidiol (CBD) product from the United States to be administered by clinicians treating Wellington patient Alex Renton.

The Minister said that “despite the absence of clinical evidence supporting the efficacy of CBD in patients with Mr Renton’s condition status epilepticus, my decision relies on the dire circumstances and extreme severity of Mr Renton’s individual case”.

“I have considerable sympathy for the family of Mr Renton who face an incredibly difficult situation. Understandably they want to do the best for their son, and they believe that this option is worth trying.

“I have also considered the absence of any other treatment options, the low risk of significant adverse effects, and the conclusion reached by the hospital ethics committee from an individual patient perspective.

“Ministerial approval in this case does not extend beyond Mr Renton’s application and should in no way be construed as setting a wider precedent,” he said.

Mr Dunne said the advice he has received was that there remains a lack of clinical evidence supporting the use of CBD products in sufferers of Mr Renton’s condition.

“The fact that Elixinol does not have a supporting pharmaceutical testing regime means this application has been reviewed as a stand-alone case and weighed against the severity of his condition.

“My officials will be closely following the outcome of studies overseas, including those due to commence next year in Australia, on the efficacy of different products. Those results will help to inform future legislative and regulatory considerations here in New Zealand.

“I am satisfied with the way the DHB and the Ministry have handled this matter. After exhausting all recommended and standard treatment options, CCDHB made a clinical decision last week to complete the necessary documentation to apply for approval to use a non-standard medicinal cannabidiol treatment for Mr Renton. That application was lodged with the Ministry yesterday afternoon. Ministry officials considered the application as a matter of priority and briefed me this morning.

“I hope for a positive outcome for Mr Renton and his family,” Mr Dunne said.

Coma continues while the DHB stuffs around

Seven Sharp reported on Friday that the Wellington DHB had agreed to apply to the Ministry of Health to enable CBD (non-intoxicating cannabis oil) treatment of Alex Renton, who has been in an induced coma for sixty days due to seizures. See “Teen in coma for 57 days needs legal access to cannabis oil”.

Stuff update this in DHB delays treatment application for teenager in coma.

Alex Renton, 19, of Nelson, has been in hospital since early April and remains in “status epilepticus”,  a kind of prolonged seizure.

Capital & Coast District Health Board decided late on Friday to apply to the Ministry of Health for approval to use a marijuana extract to treat him.

The ministry is yet to receive the DHB’s application. A DHB  spokeswoman said staff would work on the application on Monday, and was expected it would be sent to the ministry in the next couple of days.

This lack of urgency from the DHB is very disappointing, even disturbing. Possibly disgraceful.

Alex is still in a coma. His family are still waiting for something that may help him.

Damien O’Connor speaks up about it.

O’Connor, a former associate health minister, has been in contact with the Renton family and says he is outraged that bureaucracy has got in the way of saving someone’s life.

“As a previous minister, I’m well aware staff will work 24 hours a day to get something done and, if they’ll do that for a trade deal, then they should be doing it for a health matter,” he said.

The way Alex’s treatment had been handled was bordering on “unethical”.

The DHB’s procrastination is very difficult to understand. Someone’s life is potentially at stake.

“Teen in coma for 57 days needs legal access to cannabis oil”

Seven Sharp had an item on Alex Renton, the 19 year old who had a major seizure and has been in a coma in Wellington Hospital for 57 days. So far treatment has been unsuccessful, and his life is at risk.

His family want to be able to try using cannabis oil (CBD) which has been successful in reducing seizures in some cases.

Today, two weeks after a recommendation from Alex’s neurologist that CBD be tried, the Wellington DHB has put in an application with the Minister of Health requesting approval to be able to use it.

TVNZ News only seems to have this available online via this video; “Teen in coma for 57 days needs legal access to cannabis oil”

Mike Hosking: On a day where we found out that the courts weren’t in a position to help Lecretia Seales, what did the judge say, it’s really only Parliament’s job who can do that, we want to introduce you to a young man who has a similar vexed battle on his hands.

Nineteen year old Alex Renton, he’s been in a coma for fifty seven days with a mystery illness.

Nadine: The drugs haven’t fixed him but his family is holding out hope, because they believe Alex’s saviour could be cannabis oil. Problem is it’s illegal. So could a law change in this case save a life?

It’s use is allowed with the approval of the Minister of Health, according to the NZ Drug Foundation:

@PeteDGeorge @metiria The law doesn’t actually need changing. The minister right now could simply give approval… if he/she wishes.

Jehancasinader: (voice over video of his family celebrating Alex’s birthday in hospital):  Alex never expected to celebrate his nineteenth birthday in a coma. The pair of shows a present from Mum, for the day she hopes he’ll walk out of here.

Alex was as fit as a fiddle, until one seizure tipped his life upside down.

Alex’s doctors are stumped, their diagnosis uncertain. Meanwhile his brain is inflamed, and rocked by constant seizures.

Alex’s family believes there’s one last hope.  Cannabis. It’s illegal of course, but advocates say the oil can fire up neurons in the brain.

Rose (Alex’s mother): We’ve been offered the oil from overseas, clinically tested oil.

The oil is extracted from special strains of the cannabis plant that are very low in the intoxicant THC.

Jehancasinader: Last year we showed you how desperate Aussie families have relied on it to save their kids lives. It needs special approval. Rose says hospital officials are dragging the chain.

Rose: They seem to be frightened.

Jehancasinader: Until now Rose says drugs haven’t been a part of Alex’s life.

Rose: This isn’t about recreational marijuana, this is about medicine.

Jehancasinader:  Now Alex is being given Ketamine.

Rose: They choose to pour chemicals into him, but they will not choose a natural herb extract.

Jehancasinader: Rose believes time is running out for her boy.

Rose: A petition of twenty five thousand people have supported this treatment for Alex, and still we wait, he waits, because one hospital thinks they know better.

Mike Hosking: Jeez it’s been a tough day in so many respects hasn’t it Jehan, even to you, you’re with us live, just tell us how is Alex doing and what seems to be the hold up, what seems to be the problem here.

Jehancasinader: Well Mike I visited Alex here at Wellington Hospital late last night with his Mum. It was pretty tough actually seeing him lying in that bed unable to move and unable to talk.

Now you heard Rose saying that story that she believes the hospital has been dragging the chain on this, and we have the proof tonight.

The Ministry of Health says that it still hasn’t even received an application from the hospital for this cannabis treatment to be given to Alex.

Now this is two whole weeks after the neurologist said look we really need to look at this as an option. He is deteriorating.

Now within the past hour I finally heard from the DHB and they’ve confirmed that today they’ve decided to put that application in to the Minister of Health. He will have the final say on whether the cannabis treatment is granted and meanwhile Alex is spending his fifty seventh night in that hospital behind me.

Associate Minister of Health Peter Dunne will now have responsibility for this decision.

Hope for Alex Renton

Some hope for Alex Renton – or at least for his family, who have been watching over him in a coma for 57 days now.

Stuff reported recently: Family’s desperate quest for cannabis oil 

Nelson teen Alex Renton was hospitalised in early April after a serious seizure. He has been in an induced coma in Wellington’s intensive care unit since April 8.

Alex remains in ‘status epilepticus’, a kind of prolonged seizure.

With a recommendation from one of Alex’s neurologists, his family are now keen to try something new – a cannabinoid oil (CBD) extracted from marijuana that international research has endorsed as a treatment for seizures. But accessing the oil, even with the support of a neurologist, has proved nearly impossible.

This was covered on Seven Sharp tonight. They said the problem was inaction by the DHB, who need to submit a request to use CBD to the Ministry of Health.

They have also said that the DHB agreed today to submit a request to the Ministry of Health. Once they get that in it will be up to the Ministry and Peter Dunne as Associate Minister of Health as it’s his responsibility.

Cannabis oil isn’t guaranteed to be successful, one report was that it gave a 30% chance of improvement.  But for Alex and his family any chance is better than what they are having to endure at the moment.

Sativex or CBD for teenager coma treatment?

A very sad case in Stuff – Family’s desperate quest for cannabis oil – with a teenager in a coma for 54 days and his family denied treatment they hope might help where nothing else has.

Nelson teen Alex Renton was hospitalised in early April after a serious seizure. He has been in an induced coma in Wellington’s intensive care unit since April 8.

Alex remains in ‘status epilepticus’, a kind of prolonged seizure.

Despite a barrage of tests, the underlying cause remains unknown, although doctors suspect some variety of auto-immune encephalitis. Two attempts to wake him and multiple varieties of anti-epileptic medication have failed to make an impact.

An awful situation for the nineteen year old and very difficult for his family.

With a recommendation from one of Alex’s neurologists, his family are now keen to try something new – a cannabinoid oil (CBD) extracted from marijuana that international research has endorsed as a treatment for seizures. But accessing the oil, even with the support of a neurologist, has proved nearly impossible.

As Alex is legally an adult, his mother needed to gain authority over Alex’s medical decisions. After 36 hours in the Wellington District Court she was granted interim guardianship.

Neurologist Ian Rosemergy endorsed her attempt, writing in a letter that it “should at least be considered”.

“We understand that this is outside the normal parameters of the management of status epilepticus however this is the family’s wishes and we are happy to support them in this,” he said.

So a neurologist thinks it’s ok to try or at least consider another form of treatment but that might be impossible.

 New Zealand has no clinical standard for the oil, meaning no hospital will happily administer it.

Even getting the oil into the country would require considerable effort.

“It’s illegal to produce medicinal cannabis in New Zealand, so you have to do it overseas, but it’s at a horrendous price”” said Renton. She was given a quote of US$3000 (NZ$4200) for 100ml of the oil.

“Then getting it through the governmental side and the political side will be almost impossible. [

“Families shouldn’t have to fight. I shouldn’t have to fight to get what Alex needs.”

There’s no guarantee it would help but nothing currently available has helped so far.

Minister of Health spokesman Peter Abernethy clarified the Government’s position.

“Policy over successive governments has been to not support the use of leaf cannabis or cannabis oil for medicinal use,” he said.

“This position is supported by there being questions over the standardisation and potencies of natural cannabis, and the availability of pharmaceutical forms of cannabis as approved medicines.”

There seems to be a resistance to using any medication with any association with cannabis. There is one cannabis extract drug available but ironically it has an intoxicating effect.

The Government allows oral treatment of a drug called Sativex, which contains cannabis extracts that include CBD. Ministerial approval is required, and the drug is expensive, but it is legal.

Renton is wary of the higher THC content in Sativex. THC is the intoxicating agent in marijuana.

“He is already so sedated with medical drugs. I don’t want him to wake up in that state, but I may have no other choice,” Renton said.

“This isn’t just about Alex. There are thousands of people who could benefit from medicinal marijuana grown in New Zealand.”

I don’t know whether New Zealand health authorities just have an anal attitude to anything related to cannabis or if they are exercising normal medical caution on drugs with insufficient research available.

But it’s not as if there’s no history of the effects of cannabis, it’s one of the most widely used drugs in New Zealand, which as a country is one of the biggest users of cannabis in the world – illegally.

But it appears that there may be insufficient medical evidence to be sure about the safety or efficacy of CBD.

Dravet syndrome is a rare form of epilepsy that is difficult to treat. Dravet syndrome, also known as severe myoclonic epilepsy of infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge.

While high profile and anecdotal reports of results from high-CBD/low-THC preparations have sparked interest in treatment with cannabinoids, there is insufficient medical evidence to draw conclusions about their safety or efficacy.

This makes it very difficult for Alex Renton’s parents. It is an awful situation for them to be in, knowing (or at least hoping) there could be something that could help their son but with little hope of being allowed to try it.

The family remains committed to obtaining CBD, setting up a Change.Org petition to pressure the Government, gaining over 400 signatures. A GiveALittle Page has allowed the Nelson community to support the seven-child Renton family as Alex’s coma has continued.

The petition currently has 13,897 supporters (7:40 am, June 1).

John Key is nowhere to be seen on medical use, although he recently stated “I just don’t agree with drugs”.

Prime Minister John Key has ruled out relaxing cannabis laws while campaigning for the Northland by-election.

In response to a question from a voter Mr Key said he did not support decriminalisation of cannabis.

The voter accused Mr Key of wanting to lock people up in jail.

“It’s not so much that, I just don’t agree with drugs,” the Prime Minister said.

Except alcohol.

The Children’s Commissioner (who happens to be a doctor) “says New Zealand should be trialling medicinal cannabis for children” – Commissioner calls for medicinal cannabis trials.

Children’s Commissioner Dr Russell Wills says New Zealand should be trialling medicinal cannabis for children.

His comments come as an eleven-year-old girl becomes the first New Zealand child to be prescribed medicinal cannabis extract, called Sativex.

Sativex has been approved for Multiple Sclerosis and chronic pain sufferers.

But its use – untested for a child – has Dr Wills worried. He says Sativex may have side effects for children including sedation and hallucinations

“We know those side effects can be pretty substantial,” he says.

Because of those fears, he says some parents are breaking the law to make another form of cannabis oil they believe is far safer.

“Parents are bringing it in themselves because they are desperate for a solution to a devastating disease.

“The right solution is to enrol those children in an international trial.”

The situation is changing quite quickly overseas.

Medical cannabis: Norfolk Island decision sparks renewed calls to legalise drug for Australian patients

A decision to grant a licence to grow medicinal cannabis on Norfolk Island has sparked renewed calls for the drug to be made available to Australian patients.

Cannabis producer AusCann has become the first Australian company to be granted a license to grow and export medicinal cannabis to an international market.

The company will grow medicinal cannabis on Norfolk Island and export it for sale in Canada.

The company said it hoped it would soon be able to export medicinal cannabis to mainland Australia, with legislation due to come before Federal Parliament in the coming months.

But Australian review jeopardises Norfolk Island medicinal cannabis export deal

A landmark deal to grow a high-strain medicinal cannabis on Norfolk Island for export to Canada is in jeopardy, with the Australian government reviewing the decision.

But Support grows for medical marijuana before Federal Parliament vote.

More than two-thirds of Australians back the use of medicinal cannabis, according to a new survey likely to bolster support among MPs and senators who are set to vote on the issue in the coming months.

Palliative Care Australia has found 67 per cent of people are happy to see the drug used to help patients with chronic pain and illness – and support is strongest among the elderly.

The survey found people in older age brackets were more supportive of legalisation than the young: 72 per cent of 75 to 84-year-olds are in favour, compared to 62 per cent of 18 to 24-year-olds.

The survey of 1006 people from across the country found just 9 per cent of Australians oppose the use of medicinal cannabis. About a quarter – 24 per cent – say they are not sure.

An unlike New Zealand there seems to be a willingness to allow the use of medical cannabis by their politicians:

The results will further add to the momentum behind a legalisation bill currently before the federal parliament.

The bill would make the federal government responsible for overseeing the production, distribution and use of medicinal cannabis.

A Senate inquiry into the bill is set to report back to Parliament next month. The bill looks likely to pass into law, particularly given Prime Minister Tony Abbott threw his support behind the legalisation last year.

“I have no problem with the medical use of cannabis just as I have no problem with the medical use of opiates,” he said.

In the US there has been many changes to legislation over the past eighteen months with various degrees of availability of or research into CBD – CBD Oil Now Legal in 14 States (with four more “on the verge”)

Alabama On Apr. 1, 2014, Gov. Robert Bentley signed Carly’s Law. The bill calls for the University of Alabama to conduct research into cannibidiol’s efficacy in treating neurological conditions such as epilepsy. UAB would be able to prescribe the oil to approved patients.

Florida On Apr. 22, 2014, HB 843 passed the House Judiciary Committee by a 15-3 vote. The bill calls for “four regional orginizations around the state” to “grow, test and dispense” the oil. A patient registry would be created. Unlike other CBD legislation, HB 843 is not limited to seizure conditions; patients with Parkinson’s, Alzheimer’s, PTSD and cancer would also qualify.

Georgia CBD oil legislation known as Haleigh’s Hope Act, failed to receive a Senate vote after sailing through Georgia’s House on Mar. 4, 2014. However, in May, Gov. Nathan Deal signed an executiuve order calling for a study. The British firm GW Pharmaceuticals and Georgia Regents University are collaborating on the research. The legislation was reintroduced for the 2015 session. The House passed it on Mar, 25, 2015. The bill covers eight conditions, including seizures, cancer, MS, ALS, sickle cell and mitchondria.

Idaho On Apr. 7, 2015, the Idaho House approved a CBD oil bill by a close 39-30 vote. Named for 11-year-old epilepsy patient Alexis Carey, the legislation would allow parents to possess up to 32 fluid ounces of liquid cannabidiol (max 15% CBD and .03% THC) to administer to chilldren who suffer from seizure disorders. On Apr. 16, Gov. Butch Otter vetoed the bill. However, he says he’ll issue an executive order requiring the state’s Department of Health and Welfare to study the effects of CBD oil on epilepsy; this may lead to access to the oil for children.

Iowa On Apr. 9, 2014, the House Public Safety Committee passed a CBD oil bill by a 13-5 margin. The legislation, already been approved by the Senate, is strictly intended for patients with epilepsy or other seizure disorders. It allows for possession of a six-months supply (32 ounces) and calls for the University of Iowa to conduct a CBD study. Patients will need to go out-of-state (presumably to Colorado) to acquire the oil.

Kentucky On Apr. 11, 2014, Gov. Steve Beshear signed SB 124 into law. On Mar. 12, Kentucky’s Senate unanimously approved the bill. On Mar, 26, the House did the same. The new law allows the University of Kentucky and University of Louisville med schools to conduct research into CBD oil and provide it to patients enrolled in the trial program.

MIssissippi  On Apr. 17, 2014, Gov. Phil Bryant signed a bill named which calls for the National Center for Natural Products Research in Oxford to produce the medicine.

Missouri  On May 1, 2014, the Missouri House (136-12) and Senate (unanimous) passed CBD-only leglislation.The bill directs the state’s Department of Agricultiure to set up a system for non-profit applicants to produce the oil under Health and Senior Services guidelines. Patients who suffer from seizures must prove that other treatment regimens have failed.

New York On June 3, 2014, Gov. Andrew Cuomo announced that the state has entered into an agreement with GW Pharmaceuticals to investigate the efficacy of cannabidiol use by children suffering from the seizure disorders Dravet’s syndrome and Lennox-Gastuat syndrome. The clinical trials will take place at hospitals, universities and medical colleges. GW is already working with NYU’s Langone Medical Center on a trial involving 60 children and their CBD product, Epidiolex. New York passed a broader medical marijuana bill on June 20.

North Carolina  On June 27, 2014 the state legislature passed CBD-oil bills. The legislation calls for a trial study to be conducted by the state’s top four universities – UNC, Duke, Wake Forest and East Carolina. Th primary focus is making making the oil available to youngsters who suffer from seizures. Neurologists are responsible for providing the medicine.

Oklahoma On Apr. 30, 2015, Gov. Mary Fallon signed legislation making Oklahoma the 14th state to legalize CBD oil“This bill will help get sick children potentially life-changing medicine,” Fallin started. “By crafting the legislation in a way that allows for tightly controlled medical studies, we can ensure we are researching possible treatments in a responsible and scientific way. It is not marijuana, and it is not anything that can make you high. This law has been narrowly crafted to support highly supervised medical trials for children with debilitating seizures.”

South Carolina CBD oil legislation passed South Carolina’s House (92-5) and Senate (unanimous), and became law on May 28, 2014. The bill requires a clinical trial to be established at the University of South Carolina.

Tennessee Last May, Gov. Bill Haslam signed a bill that directs Tennessee Tech University to create a research program to study the efficacy of CBD oil used to prevent seizures. The University is required to provide oil to other schools of medicine. All research must be completed by 2018.

Utah On Mar. 25, 2014, Utah Gov. Gary Herbert signed HB 105 into law, making Utah the first state to legalize CBD oil. On Mar. 11, Utah’s Senate unanimously passed the bill which instructs the state’s Department to Agriculture to grow low-THC industrial hemp for the purpose of producing cannabis oil. Known as the “Plants Extracts Amendment,” the bill allows Utah residents to acquire the medicine in Colorado and bring it back to Utah.

Virginia After sailing through Virginia’s Senate, the House version of SB 1235 received a unanimous 98-0 vote in favor on Feb. 10. The bill prevents patients from being prosecuted for using cannabis oil for seizure-related conditions.

Wisconsin  On Apr. 16, 2014, Gov. Scott Walker signed  AB 726 into law. It’s unclear where and by whom the oil is going to be produced.

In New Zealand we seem to have a clash of Government caution and parent desperation.