Dr Hickey on Medical Cannabis.

This Monday just been there was a meeting at the Auckland town hall discussing Cannabis Law reform.  A broad selection on the Panel including Helen Kelly, Dr Huhana Hickey MNZM from the perspective of Medical reform, with others including Chris Wilkins and, Prof Max Abbott CNZM and  Dr Warren Young CNZM on the panel, turn out was fair with about 80 odd people, with another 50 odd online.The highlight for me was the question and answer response in this video that I felt worth sharing.

An open letter from Toni-marie Matich, CEO of United in Compassion NZ, about Medical Cannabis in NZ

My name is Toni-Marie Matich and I am co-founder and CEO of United in Compassion NZ, a non profit charitable trust formed early this year as a sister branch to our Australian team co-founded by Troy Langman and Lucy Haslam. I came about advocating on this issue some 4 years ago, I am a solo mother of 5 children and my eldest daughter 17 suffers from Dravet syndrome, a intractable, life limiting and progressive form of Epilepsy where she would seizure up to 1000 times a day.

My daughter has being on dozens of medications, she has undergone a VNS implant one of the first in NZ which was ineffective, high dosages of steroids, and other more ‘alternative’ treatments such as sacral massage and naturopathic remedies.

By the end of 2012 she had had 122 hospital admissions for non convulsive and convulsive status (ongoing prolonged seizure activity) some of these admissions were to ICU, and despite having over that decade 2 very proactive and compassionate paediatricians we were told to prepare for the worst and hope for the best.

My daughter at that time was largely wheelchair bound, oxygen reliant, out of school for 5 years, and we relied heavily on funded respite and other various support services, all at a large expense to the government.

Before I got married and started a family my initial studies were in science and technology, I also went on to study a certificate in horticulture from home when my eldest children were younger, over the years it became apparent that my full time job would and has been as my eldest daughters carer.

This extends into an advocacy role for every aspect of her care from special education through to funding, it is at times often an exhausting role as you try to navigate through the various appointments and systems of support.

In 2012 when we received a heartbreaking prognosis I started to look desperately into any other possible treatments that could extend her life and give her a better quality, I learnt of medical cannabis through an American Dravet support forum and to be honest I was at first pessimistic, however as I researched and reached out to those with knowledge I soon learnt that it may very well have therapeutic benefits for my daughter.

I soon learnt that due to the illegality of the plant and the lack of research and evidence of its benefits or efficacy it wasn’t available to us here in NZ.

What I did next was risky and illegal as I went about importing seeds of high CBD (cannabidol) and low THC (aka 1 compound of the plant known to get recreational users ‘high’) over 18 months I then had associates in the horticulture industry cultivate, another within the pharmacological industry was able to test the plant matter for panels of compound ratios as well as ensuring it was clean of micro organisms, solvents, metals and any other potential contaminants that could make someone unwell, this was an expensive and risky undertaking whilst caring for someone so ill.

I then went on to make the plant matter into a tincture which was again tested for adequate ratios, I consulted with several MC specialists in the states as to possible contraindications with other meds she was on and dosaging ranges, this too was expensive and time consuming, all the while constantly researching global developments.

We started the tincture in 2013, within 3 months seizures had reduced by at least 50%, by 6 months people were commenting on her speech being clear and more understandable,and she was becoming less dependant on her wheelchair or other aids, within a year she was back to attending a special school for 4 days a week and she had attended the hospital just 7 times down from the previous 122 the year prior.

Life was wonderful, we went out on outings as a family, my daughters personality was discovered as it emerged out of the cloud of post seizure state that caused such severe brain damage, my anxiety reduced and I could have a full nights sleep.

By the end of the first year I informed her paediatrician of her being on the tincture, he was surprised and also concerned, and he advised me responsibly of the possible consequences as well as being compassionate and supportive of my choice, which isn’t an easy position for a paediatrician to be in, especially when they are the NZ Children Commissioner.

In October of last year after 22 months of significant reduction in seizures and the most sustained reduction in her life thus far the seizures begun returning and unfortunately the ability to have the plant material tested fell through, it was advised that a different ratio or strain could again be effective, however I couldn’t risk not having testing ability. I have no regrets of what I did, I gave my daughter the best quality of life over that period against the odds of her condition, currently her seizures are poorly controlled and she is again regressing.

United in Compassion NZ

I want to share our story and my role within UICNZ which has seen a database of 7000+ individuals join wanting access to medical cannabis, many of these people are either out of time or out of options and their stories are overwhelmingly sad, these are individuals with cancers, intractable epilepsy,hiv/aids,motor neurone disease, multiple sclerosis, chronic pain,ptsd/anxiety, alzeimers, chrohns, tourettes – I can tell you now that illness knows no boundaries, these people come from all walks of life and yes they are vulnerable, exhausted and desperate to know if medical cannabis could possibly improve there quality of life and reduce the symptoms of their illness.

We hear and read of the remarkable stories globally and like my daughters, but what we don’t hear about is the lack of regulation of products,the patients who don’t benefit from it or those who suffer contraindications and side effect.

And the disturbing part is those out there known as ‘snakoil sellers’ who sell crap products to vulnerable unwell people at horrific prices without containing what they claim to,some of these products can be made from the by product of industrial hemp and contain contaminants that make patients very unwell, I’ve heard of stories where people have to pay $10,000 upfront before they will receive their 3 months supply! So its a industry with issue like any other and we need to take both the negative aspects and positive of this from a global perspective and consider how we can learn from it to progress logically

Earlier this year and also last week I met with the Hon Peter Dunne in conjunction with Ross Bell from the NZ Drug Foundation and with the support of the Children’s Commissioner who have both acted as mentors and advisers to me.

The meetings have been constructive and the minister has always been approachable and compassionate, he tasked me with a working group within the MOH who we frequently engage with on this issue and how to logically progress in relevance to the current political and medical landscape in NZ.

I can tell you now that I have a immense respect for those who we have engaged with,I have and am constantly learning.

The purpose of last week’s meeting with the minister was to find out whether there is the ability to run observational trials under compassionate grounds for those who would meet such circumstances and whether we could collaborate with our Australian branch in connecting the relevant Australian governments who are working on regulation and trials of compassionate access over the ditch with those here in the ministry so as New Zealand could possibly engage and contribute to such developments, or duplicate that process here, those discussions have started and are ongoing and positive.

Our Australian branch ran a successful medical cannabis symposium in NSW last year which was the catalyst for change and saw over 55 million dollars go into the research and development of medical cannabis.

UICNZ are planning on running a first of its kind medical cannabis symposium in march of next year, we will bring in international and national experts such as Dr Alan Shackelford who is our medical advisor, Dr Mike Nichols of Massey University,Dr Bonnie Goldstein, United Patients Group who have the ability to offer educative courses and seminars at a medical level supported by the American Medical Association, the lineup is looking impressive.

What we lack is support from those who could be advocating more for patients. I have written to the NZMA 7 times this year and received not one response, our organisation has approached over 200 relevant organisations in NZ over the past 2 years to garner support such as the cancer society, epilepsy NZ, Autism NZ, the MS Society and not one has responded to us.

We even approached the fundraising institute of NZ who help with fundraising for the symposium and were identified as a ‘black sheep’ with many individuals not wanting to help us due to possible conflicts of interest with other medical foundations they also work for, it took 3 banks and 6 months before we could setup a bank account.

So the issue doesn’t just sit with the MOH or the minister who in fact have been in regards to our work with them helpful and compassionate, this issue sits with the conservative public of NZ and the likes of those described above who could be doing more to support logical progress and appropriate support, education and research of this issue.

If we are to progress this issue in NZ then it must be done logically, education of the endocannabionoid system and a plant that has over 500 compounds (not just THC!) is vital, it is through education and mature balanced discussion as to how medical cannabis could be regulated here through a moderated criteria and how we can best support medical professionals so they are able to support patients that we will progress.

This past few days has seen me inundated with messages, emails and media contact as to Helen Kelly and her admittance of use of cannabis in helping her with her journey and diagnosis of cancer and again as it did with the Alex Renton case the public debate has opened, I ask that people keep an open mind on this issue and also with respect to the various frameworks needed to progress it logically

Toni Marie Matich

United in Compassion is officially registered and seeking donations!

What is Sativex, can we do better?

Sativexpack

During all of my posts in Medical Cannabis, there has been may references to Sativex, the only LEGAL medical Cannabis preparation in NZ, so I thought it was time to delve deeply into the product and explain it, and why it is an incomplete solution to the problem.

Sativex, with the scientific name nabixomols is essentially hash oil in a mouth spray designed and patented by GW Pharma. Grown in high quality conditions, mould (bud rot) and pesticide use is controlled,  just like at other high end medical Cannabis growing companies. Bedrocan from the Netherlands and Canada, and Tikkun Olam from Israel also grow the plants to similarly tight conditions, so firstly the growing phase is not particularly special or unique.  To quote Kevin Hague “If they can do it, there seems to be no reason why New Zealand, a country that prides itself on high-quality primary production, cannot.”

In order for Sativex to have a reliable dose per spray, it is unique in that it is made from 2 Cannabis liquids,  a High THC variety, similar to the plants grown for recreational purposes, and a high CBD Variety, similar to the famed “Charlottes web” strain.  By manufacturing the liquids separately, they can then factor in for variances in yield as the 2 oils are mixed, and get a more accurate dosing than if a single breed of plant was grown with an intended ratio from the start.

To make it seem more pharmaceutical and artificial (important for public perception), the typical amber or brown color of hash oils had to go, this is the magic sauce, a patented process is used to remove the chlorophyll and and much of coloration, that may normally be visible, for example, in “honey oil

The additives used in extraction are anyhdrous ethanol and propylene glycol, many in the Cannabis Law reform community use the argument against processed medicines based on adding “harmfull” chemicals, but in truth, if you don’t have adverse reactions to a glass of wine and a scoop of icecream, both of which include these ingredients, you wont be having any adverse reactions to chemicals in this medicine. The last additive is of note, it effects the taste,  Cannabis extracts don’t taste all that great, so Peppermint oil has been added to make it more palatable.

The method of administration is sublingual, or under the tongue,  this was fairly novel for Cannabis, the benefit of administering under the tongue, is that dosing is far more reliable, and it bypasses the metabolism by the liver.  If it were a drinkable liquid, it would be very variable in dosing between patients, eg those with reduced liver function, or even the minor considerations of how full or empty the stomach is, etc.   A liquid or a dissolvable tablet that is placed under the tongue and left there to be absorbed would perform identically, they go straight to the bloodstream in a reliable fashion.

The Spray bottle is novel, GW deserve full credit for this, each bottle has about 90 Sprays, a nice and portable method that can be done in public without raising eyebrows, but as discussed above, the same could be achieved with  measuring a liquid in a syringe, or having a tablet dissolve  under the tongue.

Sativex is still a FULL PLANT extract, with the plethora of secondary chemicals,  generating “the entourage effect“.  Despite being listed with only the 2 primary active ingredients, THC and CBD, it contains all of the minor terpenoids and cannabinoids in unmeasured and minute amounts, as it is still a WHOLE PLANT extract, this works in its favor, as CBD is well known to reduce the negative effects of THC, and the minor chemicals have been demonstrated to improve therapeutic effects, a cannabis oil will always beat a single chemical extract.

Sativex is vaguely psychoactive, from speaking to a patient I have blogged about, compared to Medical Cannabis liquids high in THC he had sampled in Canada,  the psychoactivity is much closer to that of a quick acting anti depressant, similar in rapidity to the valium class of drugs, but his mood was lifted to what could be considered normal, his wife being tearful at the elevation of his mood and restoration of his personality to what it was pre-injury, a profound effect, and much less appealing to recreational users than would be expected, as the CBD effectively blunts any euphoria generated from the THC.

Another barrier to access is cost,  as a company that has patented certain aspects of production and manufacture, and taking a significant business risk in the UK trying to push forward with a Medical Cannabis preparation, it is only natural that GW Pharma demands to make good on its investments and risks that it has taken.  There also seems to be significant price gouging in the distrubution channels to NZ, I have heard from another Medical Cannabis supporter that the price is about 1/3rd of what we pay in the UK….. Currently in NZ, the starting price for a month of Sativex is approx $1300 NZ Dollars.  It is estimated a similar amount of  product could be made for a fraction of that price if mass produced and ignoring the capital costs such as the acquisition of land.

Lastly, Cannabis based medicines are not a one size fits all approach, Sativex is good for pain and MS, but for nausea in cancer and HIV  patients more THC is needed, and in epilepsy more CBD, or even the rarer CBDV is required,  more options need to be available, just as they are with the morphine family of medicines.

The access model for Sativex in NZ is broken, despite being available for over 5 years, somewhere in the vicinity of 60 people have used Sativex, at huge personal financial cost.

We can do better, we must do better.

United in Compassion Seed Funding – Give a little

United In Compassion NZ – Statement

Medical Cannabis and the Courts… Consistent???

Just last night I read an article about another legitimate cannabis user was before the courts and was given 12 months suspended sentence for growing 17 plants.  His condition was Spina Bifida and IBS.    He was caught out by an aerial search when a police helicopter spotted them in his backyard.  Although he has stayed out of prison it has cost him his job.

I note that a few years ago in Takaka, a woman Victoria Davis  was caught growing 62 Cannabis Plants, but was discharged without conviction.  She was growing them for her husband who lost both his legs, and was left battling phantom limb pains,  a condition that also plagues another Medical Cannabis Activist, Billy Mckee, who also ended up being hauled through the courts on what could almost be considered entrapment by the police, the NZ Drug Foundation certainly thought so.

So why was this man found guilty and handed a sentence, for 17 plants, when another gets off for 62?  was it gender or age bias?  was it the visibility of Victoria’s husbands condition versus a largely invisible illness?    The degree of difference in the handling of this is huge, and going forward, the Police will look more and more out of touch with reality and public opinion they continue to harass legitimate medical users who have no legal alternatives, and as Australia plows ahead with Medical Cannabis reforms.

Speaking of unequal treatment, J Day is coming up, and there will be a lot of recreational folk flouting the law openly, the police will be taking a hands off approach as all ways,   why not harass and charge them rather than the countries invalids?

Medical Cannabis and Cancer, a Call for Compassion.

molecularr
Below is a story of  a woman who’s husband is now very pro Medicinal Cannabis.  After finding out she was essentially allergic to the usual pain killers, Opiates, (the morphine family of drugs) the doctors were left scratching their heads as to how to help make her comfortable in her fight against the big C.  I am aware of  a single Neuropathic pain patient getting fast tracked for the legal Medical Cannabis product, Sativex after finding out they could not tolerate Opiates, however this woman suffered a few years ago before Sativex was available.   Even now, if a cancer patient was in agony, it is doubtful they could jump through the hoops to get Sativex in time, and who would pay for it? at 1300 per month, most patients couldn’t afford it, and Pharmac/MOH isn’t going to spend potentially tens of thousands of dollars on a patient who is going to die anyway. So what is the solution? a packaged prepared product readily available for prescription… Imagine if a standardized Cannabutter was able to be dispensed and prescribed in the little 5gram tubs you get at hotels etc, or a cheaper alternative to Sativex that could be placed under the tongue for an identical effect?
butter
My wife died in 2011 of metastatic breast cancer, she was 40.  She had all the conventional treatments, chemotherapy, radiotherapy, hormone therapy and surgery.  During this time we discovered she was allergic to morphine. She had 5 operations during this period and doctors tried every pharmaceutical flavour of morphine they had to no avail.  Morphine would make my wife very sick and it did not take the pain away.
In the nearly 5 years we were going through this we kept asking the doctors if there was anything else she could take for the pain and they insisted they were trying everything they could. No one told us cannabis could be used for pain relief.  It got to the point towards the end where we were out of options – conventional medicine had nothing left to offer my wife for her pain.
In desperation I began searching the internet for natural pain relief remedies and that’s when I came across information about cannabis oil. I discussed it with my wife and her GP and my wife decided she would try it.  As her primary care giver this is what I observed during her last days:
She was in alot of pain and very fatigued, she could not get any quality sleep. When she did fall asleep the pain was so bad that it would wake her up 10 – 15 minutes later and this become her cycle.
Being with someone you love as they go through this on an ongoing basis is heart wrenching.  The patient becomes very stressed and unable to relax and there is nothing you can do for them.
When we finally got the cannabis oil and administered it (one capsule a day) there was an tremendous change.  When she fell asleep she would sleep for 2-3 hours before the pain would wake her up again.  No-one could believe it but we all witnessed it.  She became less stressed and was able to relax, she also started to get her appetite back.  Unfortunately she passed away 10 days later.
What I find very difficult to understand is why none of the many doctors, nurses, and specialists we saw in the nearly 5 year period ever mentioned cannabis to us, they all knew my wife did not respond favorably to morphine and I’m fairly certain now that most of them would have known about the potential benefits of cannabis.
My wife was a wonderful person who worked hard and contributed much to our society during her life, she is much loved and is dearly missed by many – medical cannabis should have been an option and I hope in the near future it will be.  Some people are suffering needlessly.
Regards
Craig

My response to Peter Dunne’s speech at the 58th Session UN Comm. on Narcotic Drugs, Vienna, Austria

From another Medicinal Cannabis Campaigner, and Legal Advisor to Green Cross. The Canadian patient referred to is the one and the same from my “Canadian story” blog post a while back, who has now successfully gained access to Sativex, and fighting ACC to fund it, who will do anything to dodge stumping up for such an expensive medicine, and which would set a dangerous (expensive) precedent going forward….

cannabias

logocannabis

The key words of Peter Dunne’s speech at Vienna to do with medicinal cannabis are as follows:

I have asked my officials in New Zealand’s Ministry of Health to look into the evidence and efficacy for cannabis as a medicinal or therapeutic relief.

The evidence, however, has been underwhelming.

It is anyone’s guess what the evidence was and two OIA Requests have been placed to find out.

That it was “underwhelming” immediately assures me that the evidence from the MoH was scant, possibly outdated and confined to the New Zealand statistics to do with Sativex, since this is the only lawful means to assess its medicinal and therapeutic benefits in practice in NZ. I suspect the MoH did not look very hard in to the international studies and clinical trials going on.

Sativex, a Medsafe approved drug , may be prescribed for the following indications:

Approved uses:
multiple…

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Medical Marijuana, Munchies vs HIV….. (Munchies wins)

My first patient story from an angle other than pain!!  this patient has been active in the past within the Medical Cannabis community, and has successfully beaten the odds to persevere with HIV when most of his peer group in a similar position have bitten the dust.  Nausea and appetite stimulation is the other big condition with significant evidence that Cannabis is renowned for treating. Although this man has HIV, even more evidence can be had for fighting the same symptoms as side effects of Chemotherapy treatment for those fighting Cancer.

AIDS

It was quite a shock to be diagnosed HIV+ some years ago.  Thoughts of an early death and suffering sprang to mind.  Upon educating myself about the virus I discovered the anti viral medications often cause extreme nausea and other serious side effects. I learned that many people were resorting to cannabis to control nausea and stimulate appetite.

I began medications immediately upon diagnosis. I was afraid, having been told of the likely side effects.

The morning I swallowed my first handful of drugs I will never forget.  Within half an hour I was extremely nauseas. I actually began vomiting until I was simply dry retching.  I thought about having to take more medications later that evening and became very concerned.  I tried to eat some lunch but never actually put any food in my mouth due to the extreme nausea and vomiting. I began to despair at what my life was going to be like. I cried.

Mid afternoon arrived and I forced myself to put a chicken in the oven for dinner, knowing I needed food with my drugs. As soon as I could smell it cooking I was vomiting wildly. I was so upset, in tears and despairing. I could not stand the smell of the cooking chicken, one of my favourite foods, so took it from the oven and threw it away!

Amongst tears and worry about how my life was to be I began to wonder if I should try cannabis for it’s anti emetic properties. I called a family member who brought me some cannabis. I was a wreck. Vomiting, crying and really in a panic. I took two puffs on a cannabis cigarette and my extremely severe and debilitating nausea was completely removed.  Completely! I was shocked but of course happy that my full day of vomiting had come to an end. The “high” had completely and utterly overruled the nausea! I cried in front of my children, only this time it was tears of relief and happiness. I ate food wolfing it down. Thank you to the “munchies” syndrome associated with cannabis.

From that day on I thought I would use cannabis. I was able to produce my own much of the time. It is not hard with a bit of study and a good teacher.  It was however illegal. I concluded that a law which may prevent me having a good quality of life and even life itself by allowing me to keep my medications down without vomiting them out was wrong. I have a right to do what it takes to stay alive I told myself. I did what I needed to stay alive and as well as possible.

I started a support group, contacted media and made sure my doctors knew what I was doing. My specialist at the time did not discourage cannabis use and eventually wrote to the Minister of Health suggesting I should be permitted cannabis use.  I also wrote to Associate Minister of Health, Peter Dunne outlining how my dear friend could not stomach his life saving medications and so decided not to take them. I described how my dear friend had died a nasty death. The Government, via Peter Dunne replied that my comments and concerns were “garbage not worthy of a response!  That was well over a decade ago now.

We currently “supposedly” have one cannabis medication available in New Zealand, Sativex. I say supposedly because it is so tightly controlled not even my HIV specialist is authorised to script it! Sativex is not funded by Pharmac and out of my reach even if scripted.

I suffered a severe heart event a few years ago and cannot inhale cannabis. I am too scared now to produce my own because the stress of arrest and imprisonment may cause a heart event. I had made my own tincture which worked even better than inhaling. I cannot afford that amount of cannabis and the fear of court action prevents me doing that as well. Any processing of cannabis increases the penalties in the extreme.

I suffer terribly every day. I wonder why my government devalues my life and the lives of thousands of kiwi’s by refusing to permit doctor scripted cannabis products or even make Sativex easier to get and afford. My own government is complicit in perpetuating our suffering and misery. Nothing has changed in over a decade apart from there being much more supporting information. I am almost ashamed to be a New Zealander.