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.

Leave a comment

5 Comments

  1. Mike C

     /  1st June 2015

    If it was one of my Sons in this type of coma, I would want to try every possible safe conceivable drug to save him. But I wouldn’t want to use things like heroin or methamphetamine on my childs body.

    Reply
  2. Heroin is not as bad as people make out, its like morphine but crosses over to the brain better, its medical name is diamorphine, they use it in the UK for childbirth!!

    I am meeting the family to discuss things today, United in Compassions CEO has been working day and night on trying to get access to some medical grade stuff.

    Reply
  3. My advice is try both a high CBD product and Satifex, Medical Cannabis needs NZ based cultivation, research and development as well as wide spread education and awareness on its possible medicinal benefits, there is no time for New Zealanders to wait for overseas trials and research to finish we should be conducting our own here and urgently for those who meet compassionate grounds

    Reply
  4. 21k signatures now.

    Reply
    • Good job Shane

      may i suggest you send the link (email) to 121 people in Wlgtn.. maybe they will sign it ? :/

      Reply

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