I am taking Cannabis Oil to manage my pain as my lung cancer takes over my body. It’s sort of as simple as that really. For some people talking about dying is confronting but actually talking about it allows us to think about how it happens – it is actually as much a social event as a physical one and knowing someone is comfortable, getting good treatment and pain relief is very much part of the social dimension as the physical one.
Since I have been public about it I have received so many very very sad emails from families also wanting access. Children with brain tumours, partners in their last stages of life zonked out on morphine and wanting something less brain numbing, people with elderly parents who are suffering from terrible arthritis and can’t cope with opiates so are basically in pain constantly and unable to move etc. It really has been incredible and quite heart breaking. Many are resorting to illegal supplies and this in itself is so far from satisfactory. They have no idea what the strength of the product is or what it even has in it some of the time. In countries which allow medical cannabis these things are sorted – Doctors are trained on its use and products are tailored to kids, elderly etc etc.
I might be able to get permission from our esteemed Associate Minister of Health to access a medical product. I have to apply. This actually requires me to find a product, contact the producer, convince my doctors to support my application (which I think they will do, but they will have to jump through hoops and wouldn’t it be better if they were like US doctors – trained in the various products, able to understand them and prescribe them based on their knowledge not mine) and then meet the Ministry of Health criteria which includes that other available drugs have been tried and don’t work – not that cannabis works better!
There are three categories
- Pharmaceutical grade products approved already (only one product – Sativex – used for kids with seizures – is on that list)
- Pharmaceutical grade products that do not have consent
- Non Pharmaceutical grade products
It turns out very few products are classed pharmaceutical grade and I understand no USA products are despite a growing number of products now being a regular part of the USA medical system, simply because they are not required to be to enter that market. They are carefully manufactured, identifiable as to content and regulated as to quality but NZ has a criteria they don’t need to meet. So I will apply for a non-pharmaceutical grade product which is the only bite I have had re an interest in supplying NZ a product.
The criteria for that are:
- severe or life-threatening condition (tick)
- evidence that all reasonably applicable conventional treatments have been trialled and the symptoms are still poorly controlled (so not that cannabis controls them better – but that nothing else works – well you could zonk me up on morphine and make me a zombie – its still not as good however especially for the old bones).
- evidence that the risk/ benefit of the product has been adequately considered by qualified clinical specialists – that is, the risk of treatment with an unproven product is less than the risk of non-treatment and account has been taken of any evidence of potential benefit and weighed against known adverse effects (so the Doctors have to attest to this without knowledge or training based on my research!)
- patient hospitalised when treatment is initiated (wtf!)
- patient or guardian has provided informed consent
- application from a specialist appropriate to the medical condition being treated or the Chief Medical Officer of a District Health Board (but this is not full proof – and what a burden!)
- applicant or specialist prescriber has sought adequate peer review eg, Hospital Ethics Committee approval, Drug or Therapeutics Committee review(impossible and slow!)
- provision of a Certificate of Analysis, preferably from an accredited laboratory, so that the concentration of the active ingredient(s) is known (this is proving hard to get)
I am now paying for the most basic chemo drug which has been funded everywhere in the developed world, is on the Pharmac “we want” list, is so old it is now out of patent, and would be bog standard treatment for me in Australia, UK etc but I am paying $6000 per dose here – but I can’t take cannabis?
Other families have really fallen out over the cannabis issue for sick family members. Doctors are unable to advise them and particularly doctors in children’s hospitals are very reluctant, as they do not understand these products so it is a massive leap of faith by families who want to manage their own application etc – it is a craze reversal of roles! These families are desperate to get a doctors support and it’s the cause of much friction.
Meanwhile Australian State Governments are investing in products now and getting very much into business development around cannabis and its various uses while NZ sits on its hands. I would like a referendum on the issue at the next election – and I am hoping a Bill might be sponsored to that effect (collecting signatures is not necessary and John Key has shown with the flag – you just need a Bill). It could be run at the election to save money and my bet is it will be overwhelmingly supported.
So anyway, I don’t like to go on about me really but this is an issue impacting widely on families with sick relatives. It has been moving and stressful to hear from these lovely people and so frustrating that the system is so hard – designed that way – and so reliant on the individual to get what they need.
Anyway my next step is to put in an application. I have done the best I can but even my application is light on what the form says is needed. I assume the Ministry of Health could help if they wanted to and provide advice on these products but they just seem to be in administrative mode. Time will tell. I need to talk to my Doctors and that will take time. I may even fall down at this base. My understanding is that even if it is approved, exporting cannabis product from the States is not straight forward so I could get all that way and still not get legal access. Canada is beginning to make product which might be easier – but a person could die waiting right?
But what about the others? One mum told how her 4 year old had halved in size because he was so sick he couldn’t eat (what do kids do when they get sick – stop eating!). With cannabis he had put on 4kgs in a very short time– a life saver for him – it stimulates the appetite and deals with nausea. She was being forced to give him a product she was guessing as to its strength and full content etc and was constantly worried about getting more – ideally she would get something tailor made, integrated into the kids care and health and with as little other effects on him as possible. It is just cruel.
On the other hand – I have been taking Kytruda (the drug all the publicity is about – a break though for melanoma and has had some success with lung cancer but not with me). I have paid for is (this is what Kiwisaver will be for in the future – to subsidise our underfunded health system). It is completely experimental and the Doctors admit it – they don’t know who it works with, why, exactly how or really even how to administer it the most efficiently – but oh fill me up with it – exactly because I have nothing to lose. I have also had whole brain radiation – massively dangerous – huge side effects possible – I have been lucky – but I can’t take cannabis?
I am taking nothing really that can stop this cancer killing me, and in not too long a timeframe to be brutally honest. It is my view that a good cannabis product will help me live the rest of my life in a better situation than I will without it. The fact I can’t do that shows the absurdity of the whole regime. A year ago I could have got buckets of synthetic product and there is still a system to allow that to be available – but not this medically developed product.
I think we could change this situation with a little more push – a few leaders speaking out in support, an exposure of the current system refusal by refusal and with real stories of people with real illness just wanting to live the end of their life with a bit of dignity.
Originally posted at The Standard Blog. Re-posted with the permission of Helen Kelly.