When it comes to medicinal cannabis, of the many issues facing Governments, regulators and organisations like UIC, one in particular won’t go away – and has divided opinion significantly. It is therefore something we wish to be clear about in terms of our own perspective.
That issue is whether sick Australians should have the right to grow their own plants (or have someone do it for them) specifically for medical purposes.
While it remains our position that ‘medicinal cannabis’ should mean exactly that – a medicine, which in ideal circumstances, is best administered by and consumed under the supervision of a qualified healthcare professional – as most people know, in Australia circumstances are far from ideal.
Nevertheless, use of the drug while in the care of a doctor (or other qualified individual) forms part of the very definition of what ‘medicinal cannabis’ actually is – at least according to the Encyclopaedia Britannica (which provides our preferred definition) and the entry’s author, globally renowned expert Dr Mark Ware, whose stance is quite unequivocal:
However, as we’ve already said, circumstances here are far from ideal so it’s critical also to acknowledge in this country the vast majority of individuals using cannabis for medical purposes are forced to do so outside the formal context of the doctor/patient relationship: a situation we find both potentially dangerous and completely intolerable. In fact – it’s a dramatic sign of the failure of some of the worst public policy we’ve seen.
And we also recognise that for many individuals – for a variety of reasons – growing their own cannabis (or ‘self-supplying’ as Tasmanian politician Jacqui Lambie aptly describes it) offers the only means at their disposal to access such medicines as these.
Dr Mark Ware has published over 100 papers on cannabis and pain research in academic journals, has written 6 book chapters, and has given hundreds of lectures to health professionals and the public on cannabis over the last 20 years.
For this reason, UIC is calling for recognition that the use of such products for demonstrably medical purposes should be an absolute defence against arrest and prosecution for personal-use cannabis offences. To this we would also add, that where raids are carried out and it’s clear products are being used as a medicine, legal protection against confiscation should also be afforded, since it may be a life or death matter.
These positions are – or should be – among the most obvious and least radical of policy suggestions, but the issue goes wider than that.
Some advocates – including within our own organisation – wish for the right to cultivate at home (or have this undertaken by a friend or a within a collective/co-operative) enshrined in law as a basic civil liberty: the right of the individual literally to ‘grow their own medicine’.
We also accept that a number of clinicians consider cannabis to be a dietary supplement and historically (even currently) the plant has been used as a food – but we should also make clear: UIC does not, like some campaigners, advocate for a free-for-all. We do not share the view that ‘all cannabis use is medical use’ (though much of it could be termed ‘therapeutic’) or that it ‘isn’t a drug but a vegetable‘ (it is both). Therefore to ‘save a child and let it grow wild‘ (mentioning just three of the catch-cries heard often within certain quarters of the cannabis advocacy space) aren’t ideas we subscribe to.
And while we do not oppose legalisation of cannabis for recreational purposes, nor do we advocate for it, since we feel strongly medicinal use of the plant and its general adult use are entirely separate matters.
What we do appreciate though is that the question of self-supply is a significant one – and, if properly considered, highly nuanced and not a straightforward black and white issue.
Some of this subtlety arises from the various positions – of doctors and patients alike – witnessed in different jurisdictions where medicinal cannabis is now fairly widely available – and also out of respect for how an aeons-old ‘plant medicine’ was used in the past as well as its use in the future. These aren’t to be overlooked in any discussion about cannabis and cannabis medicine.
We also believe fully that, whilst its harms have been more widely researched than any other drug on the planet, the plant absolutely needs and deserves more exploration. There’s vastly more left to learn from a scientific and medical perspective – so that even as progress being made, we know it’s still only the tip of the iceberg.
We understand too that for both scientific and medical purposes a consistent, measured and measurable medicine is an important, sometimes critical factor.
But by the same token so is being able to access affordable products as well as having an uninterrupted supply, as is the right to manage (if not always undertake alone) one’s own healthcare.
A Problem With Juicing
Patient A has complex health issues and has accessed medicinal cannabis within a variety of regulatory models intentionally (e.g. dispensary Licensed Producer direct-to-door in Canada, Licensed Producer via pharmacy and through a co-operative).
Patient A has complex health issues and has accessed medicinal cannabis within a variety of regulatory models internationally (e.g. dispensary, licenced producer direct to door in Canada, licenced producer via pharmacy & a co-operative). They have seen the significant benefits as well as the challenges posed by each model and view some as more problematic than others.
In 2014 Patient A’s doctor recommend juicing of the leaves and flower of the cannabis plant – something that couldn’t be achieved consistently or reliably – even where medicinal cannabis is otherwise easily available – without the right to grow personally. This arguably left the patient in a situation in which their doctor’s recommendations couldn’t be followed, potentially affecting their potential health outcomes negatively.
Currently in Australia – in so far as cannabis or cannabis products are available at all – such access is now largely being determined by social status and income. This is an horrific situation and at absolute odds with our Mission – which is, and always has been, to secure ‘patient access to Full Spectrum herbal medicinal Cannabis extracts and dried herb Cannabis in a manner which is safe, effective, affordable, equitable and favourable for patients.’
And for reasons explained in our Policy, some of these products (cannabis in its herbal form for example) will never be available on the Pharmaceutical Benefits Scheme and thus never subject to the system of subsidy making them affordable to the many.
This situation we feel is grotesque, leaving (legal) cannabis open to the very real danger of being an exclusive, elitist treatment option open only to a few – if it has not already become one.
Such circumstances merely encourage the continued expansion of the underground market and create more so-called ‘criminals’ in doing so. Moreover, when legal, general adult cannabis use arrives here (as it eventually will) if doctors have not embraced its medical application the majority of people using these products could well shun professional advice altogether when it comes to managing their health in this manner.
Patients with experience of the approaches taken by different jurisdictions, as well as methods of access and the work of producers within those countries, are invaluable when considering such points, as observed by the fact that they report greater medical benefits from certain products rather than others while confronting first hand the inflexibility of some models to adjust to the needs of complex disease management in various patient populations.
As far as the debate regarding the right for patients to use home grown or grower-nominated ‘medicine’ and whether it’s really ‘medicine’ if a doctor isn’t supervising its use has already been established in other regulatory models.
Some of these allow choice of access through, for example:
• Licensed manufactured supply which is meeting required testing and standards;
• Patients who may be authorised to grow at home (and have access to testing facilities);
• The personal nomination of a grower and relevant applications being submitted to Government to approve that grower (such as with the Canadian model).
In all of the above instances, authorisation by a doctor is required, unless (in the case of Canada) for adult recreational use – which is not of concern to us here.
A specific daily use limit based on dry weight equivalency and other factors is also imposed, demonstrating ‘self-supplied’ cannabis does not, in and of itself, translate into its ‘use in an unsupervised manner‘ thus rendering it outside the strict Ware/Britannica definition of what ‘medicinal cannabis’ actually is.
We believe most people’s preference would be to be able to source their products from either a licensed producer, cooperative or a nominated licensed grower where testing is available rather than trying to grow their own medicine personally. For many, growing just isn’t an option.
But there are exceptions to this. In some instances, juicing may be required, affordability remains an issue or lack of supply problematic. In any event, many of the reasons for wanting the right to home grow are not only understandable, they’re practical and totally logical.
This is especially true in Australia, where, for a number reasons including regulatory ones, supply of imported products (which are more or less all that are currently ‘available’) has become unacceptably sporadic leaving patients waiting sometimes weeks or even months for their medicines to arrive at the pharmacy. This is unconscionable; if such a situation arose with any other medicine there would (rightly) be absolute outrage.
In Canada it’s only the adult use (i.e. recreational) model that doesn’t need a doctor’s authorisation/prescription – so if the ‘intent and purpose’ of ‘home grow’ is for medical purposes then doctors are still consulted and risk factors assessed before authorisation is given. Those patients are still seeking medical guidance to access their medicine through such a programme and others like it. A further advantage Canadian patients report is that their system allows them an extraordinary ability to ‘self-titrate’ within limits that are authorised by a doctor as well as the ability to trial strains and switch products until they find the ones that best manage their symptoms due the system’s flexibility.
Monitoring The Situation
Patient B – an Australian – has also been treated overseas, including Canada. See how their doctor monitored their cannabis medcine even when sourced from a co-opertive or was self supplied.
Before every appointment with a doctor in Canada Patient B – who suffers from refractory epilepsy – was required to answer a questionnaire detailing how their symptoms had been, their seizure levels, pain levels, current dose and any adverse effects. All of these allowed the doctor to assess progress and discuss care in consultations regardless of where and how the cannabis medicine was obtained.
A commercial cannabis farm
As most are aware, Australia is attempting to work within a ‘prescription’ model of cannabis access which currently – in theory – provides the drug with the same ‘potential’ for respect as any other medicine (e.g. for use in a hospital setting, in schools and free of GST as well as opportunities for research, insurance reimbursements etc). So, (again in theory) there are some advantages to the Australian model and many potential benefits – but a number of challenges too.
Not least of these is the fact that, whether consumed as a prescribed product or not, the mere presence of THC in the bloodstream and/or saliva is an automatic offence under Australia’s drug driving laws (an issue that needs to be addressed urgently).
This and other challenges however make the issue of the option or right for patients to access self-supplied cannabis (or to obtain it from a nominated grower) such an important one, with several other aspects involved.
One is the current and mid-term affordability for patients needing medium to high dose cannabinoid therapies, which, along with supply problems, represent further enormously pressing issues desperately in need of confronting.
In the UK the issue of affordability attracted huge publicity this year (2019) after advocate Carly Barton began and initiative called ‘Carly’s Amnesty‘ – a scheme in which she and other individuals made it clear to police and local authorities they would be growing their own cannabis to treat specified medical conditions.
Barton had been the first UK patient to be prescribed a cannabis product after the law was changed towards the end of 2018 – but could not afford the £1,300 per month private prescription after the NHS refused to fund this form of care. This left her with no choice, she felt, but openly to break the law.
UIC sees similarities and differences with Barton’s case where Australia is concerned. In both instances costs are preclusively high, with the redeeming feature in the UK that cannabis products can – at least in theory if not in practice – be publicly subsidised by the NHS where in Australia no such possibility exists outside of a (rare) hospital setting.
In this country, it has become clear, it will potentially be years before even a small range of cannabis medicines will find their way onto the Australian Register of Therapeutic Goods (ARTG) and thus eligible for funding by the Pharmaceutical Benefits Scheme. Patients could even be waiting two or more years for Epidiolex (or a similar CBD isolate) to be registered and in any case this will only meet the needs of a limited number.
Many therefore will not have access to the most suitable cannabinoid medicines for them. This was a view with which Teresa Nicoletti – a lawyer and regulatory expert familiar with cannabis issues – agreed when speaking at the 2019 UIC Symposium. She said she felt the range of cannabinoid medicines which would be PBS funded in the next 3 – 5 years would be tiny, and would not offer a broad range of cannabinoid profiles.
Research undertaken by an epilepsy patient previously and/or currently accessing cannabis and cannabis products (oils and flower) in Washington State, Canada and Australia provided to UIC specifying costs per annum of required medicines.
Research undertaken by an epilepsy patient previously and/or currently accessing cannabis and cannabis products (oils and flower) in Washington State, Canada and Australia provided to UIC specifying costs per annum of required medicines (products aggregated). Prices based on dry flower dose of up to 2 grams per day and approx. 1 gram of full extract concentrate or an oil with approximately 850mg of active cannabinoids dosed daily.
Washington State total patient cost per year US$14,600 if sourced from dispensary*
Canada total patient cost per year CA$48,172.70 if sourced from Licenced Producers*
Australia total cost per year $104,080 sourced from Licenced Producers via pharmacy*
*As of June 2019
UIC believes that to leave patients waiting for ‘affordable medicine’ for months let alone years is beyond unacceptable, as is the current situation that offers an inconsistent and unreliable supply – something we hear about frequently. Patients we’re aware of have experienced products being out of stock both here and in Canada and this from large-scale producers – with no guarantees the problem won’t continue to crop up regularly and on a global basis which is absolutely intolerable for patients.
Under these circumstances, we do not feel it should require civil disobedience such as that of Carly Barton in the UK to secure one’s own medicine, especially in a country burdened with cost and supply problems such as those seen in Australia.
We’ve also seen the argument that ‘Corporates’ (i.e. the ‘Cannabis Industry’) should somehow step up and help out in the meantime, giving their products away until the affordability problem is eventually fixed.
This is unrealistic because of the numbers of people involved. Australia has over 250,000 epilepsy patients alone with a substantial proportion of these designated ‘intractable’. No company or even a syndicate of them could foot the bill for thousands of people like this let alone the thousands more pain sufferers, cancer patients and others…the list could go on and on.
Another assertion – one we find equally non-realistic at present – is that competition will eventually drive prices down and that this will ‘just happen in time’.
This, we believe, isn’t a solution at all; for many patients – as we know only too well – there isn’t very much time. Even in Canada – now with (at time of writing, June 2019) 180 Licensed Producers (with regular updates here) patients with epilepsy and cancer are still paying approximately $149 – $280 ++ per 60ml bottle of oil. So competition hasn’t delivered quite as much as one might expect or have hoped for.
With this in mind it may be asked how do high-needs patients in Canada cope if they still have costs in this range?
From what we understand, some do and some don’t. But the ones that can’t afford to access their medicines through a licensed producer still at least have the human right and affordable option to get them via a nominated grower or through self-grow. Such an alternative obviously helps keep costs down or to manage supply as effectively as possible and ensure there are no interruptions.
And there are further points too: those of patient choice, their human rights and the inequity between jurisdictions.
Of course, patients in one country will always be concerned and upset where they feel their own rights are fewer than those of their neighbour – it’s a feeling that things are unjust. This is particularly true when it comes to a plant-based medicine that had been used without hyper-regulation and control traditionally for hundreds if not thousands of years. An outstanding TED talk from Dr David Cassaret (a palliative care specialist) speaks much about listening to patients – their input, goals, outcomes and even a broader discussion around what dispensaries can teach doctors and mainstream medicine. All are all considered, sensibly and sympathetically. And Dr Casseret emphasises what may be the most important issue of all – the individual’s control over their life and health and how cannabis can help return it to them.
Self-supply is its embodiment and such control a critical missing ingredient.
We also need to acknowledge that for some people the preference is to be able to choose the way that their medicine is grown and then treated (e.g. organic, clean, not irradiated). As Dr Ethan Russo – one of the most esteemed academics in the cannabis space internationally – has stated, no studies exist showing the long term impacts of irradiated cannabis on patients. His talks are exceptional and notably he references the therapeutic benefits patient growing their own plants – the actual growing itself found to be therapeutic!
Given No Choice
Patient C who has complex conditions and refractory epilpesy cannot access life-saving cannabis or cannabis products in their home State of Tasmania, leaving self-supply the only option avalaile to keep them alive.
In 1998 after experiencing febrile seizures as a child Patient C – who lives in Tasmania – suffered a devastating encephalopathy and remains formally undiagnosed with the only sure diagnoses of severe refractory epilepsy and a diffuse brain injury.
In 2014 cannabis therapy was begun after the family were gifted a cannabis tincture from a local supplier. This followed bouts of drug induced psychosis with the only prescribed options available being strong sedatives to control the side effects from administration of AEDs. Patient C did extremely well on the cannabis and weaning from AEDs was commenced. Family purchased cannabis products online until they were informed no further medicine was available, that, effectively their supply had been stopped.
Further gifts were relied upon until they could grow the patient’s own medicine for him.
In 2017 the State’s ‘Controlled Access Scheme’ was launched. Family were advised the State our Health Minister to seek a legal supply.
A neurologist applied under the Scheme and the family waited over 12 months for an answer.
Another Neurologist took over Patient C’s care and told the family he too would apply. Later the family discovered the second neurologist ‘didn’t know he had to do another application.’
Subsequently the Tasmanian Medicines Access Advisory Committee (TMAAC) formally advised Patient C will not be eligible until ALL conventional medicines have been trialled, including those from the same families of AED that caused the psychosis – such medicines coming with a black box warning for suicidal ideation.
The family has openly been cultivating cannabis medicines for the patient since 2014 and have have informed their Premier, Health Minister and Minister for Police as well as the Commissioner for Police.
No-one would argue that a patient with a complex condition like epilepsy doesn’t need to be certain they receive consistent, reliable and affordable medicine. But as pioneers like Russo and the Israeli researcher Dr Deidi Meiri have proven beyond doubt – it needs to be personalised medicine – because one size most definitely doesn’t fit all.
The above points are matters at least some politicians are sensitive to. Well-known Tasmanian figure and Federal Senator Jacqui Lambie inn particular has, proven herself someone admirably across the issue.
The below is from Lambie’s website:
‘If elected, the Jacqui Lambie Network will:
• Remove the bureaucratic red tape that has ensured that patients in need have been denied the use of this treatment.
• Allow doctors – and not politicians – to decide which diseases, conditions and symptoms are best treated with the use of MC. Medical decisions should be made my medical professionals.
• Empower General Practitioners to issue a permit that allows a patient (or the patient’s carer or guardian) to produce, obtain and possess a quantity of MC sufficient to ensure treatment.
• Ensure that all MC patients return to their GP at least once every thirteen weeks to renew their permit. As with any treatment, MC treatment should be closely monitored.
• Consult with the patients, doctors, producers and the broader community in order to develop a MC supply industry that operates in parallel with self-supply patients. Allowing self-supply ensures that MC treatment remains cost-effective, while industry supports patients without the capacity for self-supply.
• Entrust patients (or their carer or guardian) to secure their own MC supply. As with other restricted medications, strict penalties should apply to those allowing their MC to reach the hands of others.
With such points in mind then, UIC believes the right to self-supply and how such a right might be realised in practice – regardless of numbers concerned – must form part of any discussion of medicinal cannabis policy going forward.
We will therefore work to ensure such an option is placed firmly upon the agenda.
Only Juice Will Do
Patient D has found juiced cannabis to be the only medicine effective to treat their severe Chrons IBS – but cannabis juice isn’t available legally…
After undergoing major surgery, prolonged hospitalisations and trialling numerous pharmaceutical products (many with serious side-effects) Crohn’s sufferer patient D found the only thing that could adequately treat their condition was freshly-squeezed cannabis juice, to which their illness responded superbly. The family began to cultivate their own plants but were raided by the police, resulting in the patient returning to hospital after a legally prescribed cannabis oil proved ineffective. After a further stay in hospital and a period of extreme sickness D was told more surgery would be needed and no available conventional medicine could help. Deciding against this route the patient self-discharged from hospital to stay with friends hours from home where cannabis juice was available. D’s recovery was almost immediate, returning to far better health within days, while being forced to become a refugee dependent on an illegal product.
Since the Australian ‘Framework’ leaves no possibility for products such as juiced cannabis to be made available to patients like D, their situation represents a further example of an absolute need for such individuals to have the legal right to self-supply their own medicine.