Brisbane: 1st April 2015

As with the Canberra and Sydney Hearings, what follows is a sketch based on the verbatim transcription by Hansard of the day’s proceedings in Brisbane. For a far more in-depth and detailed understanding of what occurred, reading the document in full is recommended. It can be downloaded here.

 

The roadshow that comprised the Public Hearings element of the Federal Government’s Inquiry into the Regulator of Medicinal Cannabis Bill rolled into Brisbane for its third and final day’s outing.

 

Its predecessors, in Canberra and Sydney, had already been thoroughgoing; the camps defined and divided between, at one extreme and as Sydney University’s Nick Lintzeris had put it, ‘the people who believed cannabis was better than sliced bread and should be in the drinking water and, at the other, those claiming no evidence of its medical value and believing it too risky a drug.’

 

Canberra, where the proceedings commenced, was the setting for the latter – by and large – to have their voices heard; Sydney, on day two, had been host to the former.  Not that anyone, reasonably, on either occasion, could have been described as ‘extreme’ though at times emotions seemed high.

 

Senator Barry O’Sullivan (Qld) whose ‘something must be done’ mien the previous day must have felt like manna to various of the pro-medical cannabis deponents who’d been gathered to make their claims, had popped up again in Brisbane, carrying his crystal ball.

 

For it was here he would make a prediction that arguably summarises what the Government finally did in light of the evidence, in light of the Report and Recommendations by the Senate’s Legal and Constitutional Affairs Legislation Committee tasked with investigating the matter. And in light of a $300 million opium poppy trade that might be at risk if  Australia didn’t meet its commitment to the 1961 UN Convention on Drugs – best not to forget that. In light of, or despite everything – the reader may take their pick;  everything but the Convention that is.  Senator O’Sullivan spoke thus:

 

We could come up with the best ideas or we can draft the best bills but unless we can create pathways with the world outside of this place and bring them with us – you have seen it – the legislation will get a haircut and someone will knock a bit of an ear off along the way and we will end up with something that is not what we set out to achieve.’

 

When he said this the bench had been hearing from mother and medical cannabis campaigner Joelle Neville and her father-in-law Paul Neville, a former Senator himself and someone presumably not unacquainted with the legislative ‘haircuts’ and the knocking off of the odd ear to which Sen. O’Sullivan had alluded.

 

But how prescient though, and far-sighted to prophesy how things would end up – with a Narcotic Drugs Amendment Act that allowed suitably respectable (and well off) outfits to grow weed under such exacting conditions it was almost impossible and cannabis turfed into the same regulatory boat as all other medications and drugs, making it, in any case, unavailable.

 

No stand-alone, single-purpose Regulator as the Bill had set out to create, overseeing everything to do with the drug; no consistency among States and Territories; no looking at the plant as exceptional and in need of exceptional handling. Nothing like that. Something like that ran the risk of being labelled compassionate, worse still, even sensible.

 

Ms Neville – whose moving story was told in her Submission to the Inquiry, had been treating her daughter Ava with cannabis under an expert in America for her tuberous sclerosis a fairly rare genetic condition causing tumours to occur in any part of the body and which had led to severe epilepsy.  Ms Neville was concerned, she said, mainly with the practical side of the proposed Bill. Travelling with the drug, ensuring there was sufficient supply – a major concern for people in her situation.

 

That, the legal position and time spent awaiting clinical trials. The issues were matters of urgency:  ‘You cannot have kids dying of cancer and kids who are fitting between five and ten times a day, waiting for five years for refinements when you know something works. I think that you would probably be quite surprised by the number ofmedical practitioners that are aware that their patients are already on it. If you were to take away the legal issues, it would be very easy for most of the people who are accessing it currently to go and get supporting letters from their practitioners to say they are on it and it is working. If you had that in your possession, then you would be free from prosecution. That should be in place today—five o’clock today,‘ Ms Neville informed the panel.

 

It wasn’t then and it still wasn’t eighteen months later. So little has changed it’s as if no legislation occurred, but that’s the Government for you; not exactly your trusted servant and heedless of Mr Neville’s entreaties.

 

He set out the family’s predicament: ‘We all clubbed in together, and Ava was taken to New York to Dr Devinsky, who was the leading person in tuberous sclerosis at that time. She has also had, as Joelle said, two operations with Dr Maixner, the leading brain surgeon in Melbourne. She has subsidised occupational therapy, speech therapy, sports therapy. You do not always laud your children for what they do, but as parents they have done an exceptional job to get this little girl—who may have been a vegetable or, at the very best, a passive, sickly child for the rest of her life—to have a reasonable lifestyle. I would also ask the committee to look at this: it is not just having whatever drugs are used to make life easy for the parents; it is also a lot to do with the child.

 

Ava was taking between five and ten fits or seizures a day. If you watch a little girl taking fits, just once is enough, but multiple times in a day, day after day, her brain was so restless that she could not sleep at night for more than four hours. Of course, she would wake up everyone in the house because she had nothing to do and she would go into her parents or, if there were visitors there, she would go and see them. For her to go through all that and to continue to go through that will have a huge effect on her cognitive abilities. People like that cannot wait three to five years for formal testing.

 

So I would appeal to the committee, in your recommendations, to see if there can be a two-tiered approach. Where there are urgent and pressing needs, perhaps some form of regulatory system could be allowed so that the drugs could get to those in desperate need, and those with more long-term effects and so on could perhaps be the source of university trials and so on. I know that since Joelle changed Ava’s treatment, she has certainly brightened up immeasurably. She goes to school and gets herself on and off the bus—lots of things that, four or five years ago, you would not have expected a little girl like this to be able to do.

 

As Joelle has said, the number of drugs that she was on could not have been helping her long-term prognosis. But now she is sleeping eight hours a night and she is a lot more relaxed person and a lot more confident person. Rather than all the time looking at this from the regulatory point of view, why don’t we look at it from the point of view of the benefit to the children? In her case, it is an epilepsy type condition, but there are others who are even worse again.

 

As Senator Bilyk just said, there are kids with cancer. It is unbelievable that there should be toing and froing when there are known products that could be assisting them. So my view was to come here today to support Joelle and to ask that perhaps you take a two-tiered approach and at least get the thing rolling while the science is going on.

 

Earlier, the panel had heard evidence from the Bar Association of Queensland which had urged an ‘evolutionary approach’, with the suggestion the Committee explore the model Canada had implemented, noting the wisdom of creating a body separate from the TGA to regulate the medicinal herb, a sentiment echoed later by the Queensland Council for Civil Liberties:

 

The TGA is really about pharmaceutical products. The particular situation with cannabis is that
anyone can grow the plant; it is a herb, or however you define it. Even the crude cannabis product has medicinal benefits. That is not in the purview or interest of the pharmaceutical companies. It is a unique situation.’

 

The Government, needless to say, saw things rather differently.

 

Professor Wayne Hall has been and doubtless will continue to be a cynosure in the cannabis world. Not just medical cannabis mind you, any cannabis. Director (Inaugural) of the Centre for Youth Substance Abuse Research at the University of Queensland, as he put it himself:

 

I have done about 20 years research on the health effects of cannabis. That is how I got to be involved in this topic originally. I was commissioned by the Commonwealth Government to review the literature in 1993, and that included a review of the literature on the therapeutic effectiveness. I have advised the World Health Organization on the same topic and have continued to do research on it for the last 20 years.’

 

What he forgot to say, or perhaps took for granted, was that he was also for some years head of NDARC – the Government’s main think-tank on drugs as well as being a member of the International Narcotics Control Board which implements, among others, the UN Single Convention.

 

In addition he he also chaired the NSW Government’s Working Party on Medicinal Cannabis which, in 2000 produced one of the most widely-cited Reports on the subject.

 

Known for the writing of, in fact, many (generally anti-cannabis) reports, he was indeed an advisor to the World Health Organisation which recently published ‘The health and social effects of nonmedical cannabis use‘ and which Professor Hall helped to edit.

 

And in 2014 he caused a media flurry after publishing the work he was referring to  – a 20-year review of studies – ‘The adverse health effects of chronic cannabis use‘ – in which he claims to prove the drug caused mental health problems, as explained in this Daily Mail article (which Prof. Hall himself called ‘misleading‘) and criticised by some as being ‘deeply flawed‘.

 

The Professor was next on the stand.

 

It all began well enough. He would, he said, ‘be very supportive of clinical trials of pharmaceutical cannabinoids—that is, constituents of cannabis—particularly of cannabidiol, or CBD, which looks to be a potentially therapeutic substance for intractable epilepsy, chronic pain and possibly psychoses. I think the Commonwealth can facilitate those trials through its role in administering international drug control treaties and through the TGA and other regulatory instruments,’ adding: ‘In order to meet the more immediate needs of parents of children who have these problems and are now being treated, state governments could be encouraged to allow medical necessity as a defence against prosecution for possession and use of cannabis.’

 

As if.

 

But anyway, the Professor was a long way from done. Anyone thinking at this point ‘so far so good’ was like the man being asked ‘what’s it like?’ on his way past the 15th floor after jumping from the top of the building.
Lance Feeney, a fellow witness from the day before, had spoken on behalf of Australian Federation of AIDS Organisations and noted around a fifth of Australia’s almost 27,000 AIDS sufferers found respite using the drug.  But Professor Hall knew something they apparently didn’t:

 

In a nutshell,’ he said, ‘there is evidence of therapeutic effectiveness of cannabinoids, particularly THC, but it is very old literature. It is on the efficacy of treating nausea and vomiting and cancer pain, particularly, and stimulating appetite in HIV-AIDS patients. It has very little use for that purpose now because there are much more effective agents for controlling nausea and vomiting, and most people do not get AIDS related wasting because they are treated with anti-retroviral drugs‘.

 

So it’s all good then.  Try telling that to Lucy Haslam who’d also shared yesterday, describing how nothing except cannabis had worked well enough for her son who was forced to endure chemotherapy.

 

And there was more still to come.

 

On the so-called ‘entourage effect‘ of the drug- that is, the claim the plant’s ingredients act together and the sum of their actions is greater than the individual component effect – Prof. Hall was unimpressed.

 

There is an infinite number of potential combinations of cannabinoids that one could trial. I think the obligation is on people to start specifying what the appropriate therapeutic ratios are. That (the ‘entourage effect’ argument) just becomes a very convenient escape clause when the evidence does not support the efficacy of particular cannabinoids. People who want to make those claims better start presenting some evidence. Otherwise, it just looks like an excuse‘.

 

Is  is not something that has promise?’ asked Senator Di Natale, the Bill’s Sponsor, ubiquitous throughout the Hearings.

 

I am saying start specifying what the combinations are rather than using this as an excuse after the fact to explain away the lack of efficacy of particular combinations,’ the Professor replied; oh had that equally distinguished and venerable savant Professor Laurie Hall been around, who just yesterday had insisted ‘the evidence that I believe is out there seems to be denied or dismissed either naively or intentionally by many people simply because they want to prevaricate on the evidence or really have other motives in denying the evidence or the strength of the evidence.’

 

The two had squared up the year before, in the pages of the British Medical Journal, when Prof. Mather had come back at Prof Hall for suggesting there is no clear evidence for effectiveness [of cannabinoids] in treating pain [or, essentially any other conditions], any benefits are likely to be modest, and there is no clear evidence that putative benefits outweigh possible harms.’

 

We disagree,’ Pror Mather and co. had said.  ‘Well-reviewed evidence indicates that the benefits of medicinal cannabis far exceed the harms when used to palliate distressing symptoms in a number of chronic conditions.’

 

Reputations are on the line gentlemen – but who is on the side of the angels?

 

Next up, two seasoned industrial hemp growers and experts, Paul Benhaim and David Gillespie – one of whom, Mr Benhaim, had been supplying the Neville family with cannabis oil through his American subsidiary company Elixinol. Both men had made Submissions to the enquiry which can be downloaded here and here.

 

Their evidence was intriguing, concerning itself largely with at-the-time preposterous regulations in Australia (some of which remain) prohibiting local human consumption of hemp but allowing the production of it for food but only for the purpose of export. Sale of hemp products for external use was however allowed in the country but providing pure, single ingredients for research purposes wasn’t. Go figure. Further evidence moved the ever perspicacious Senator O’Sullivan to crack ‘I knew we were crazy as politicians, but I didn’t know we were that nutty.’

 

And in an almost ironic echo of Nick Litntzeris’s remark in Sydney about people thinking cannabis should be in the tap-water – Mr Benhaim said some countries were doing just that.

 

Afterwards came Rhonda Miles, who had only just heard of the Inquiry and had written to ask to attend. A mother, carer and co-founder of the  Medical Cannabis Advisory Group of Queensland, she’d travelled in from Toowoomba.

 

My own situation’, she explained, ‘is that I have a 15-year-old son who 3½ years ago began to take seizures. In the 3½ years, he has been on life support on seven occasions. He has been in hospital on 63 occasions. We have had a brain surgery and a vagal nerve stimulator, which is like a pacemaker, inserted in his chest. We have tried 11 seizure medications. None of them has worked. He was in hospital again yesterday. This is our life. He does not go to school. He costs the taxpayer, just out of the DSQ budget, about $200,000 a year in overnight care. He is a multimillion-dollar child.

 

We see medical cannabis for Lachlan as another option. We understand it may not be the miracle we are hoping for, but we believe it should be an option. If we lived overseas, his situation would be an indisputable case for the use of medical cannabis. In terms of our group’s objectives, we were heartened in Queensland to see that the Police Commissioner and the Minister for Police came out only two weeks ago to say that they were supportive of reform, which is the first time we have heard any sort of positive statement from the Queensland government. As a result of that, in under a week, our group collected 3,750 signatures from the general public supporting medical cannabis reform, but, more importantly, the petition that we gathered signatures on sought immediate protection for patients now. As a patient group, we see that as step one in any reform process. We do not have the time to wait. One of the families who are here today have been flying backwards and forwards to the US for treatment for their son’s brain tumour. When they are over there, his tumour shrinks under treatment. He comes back here and then the tumour grows again’.

 

She was talking about Lanai Carter, another medical cannabis campaigner and co-founder of the Queensland group – a person who would find herself, a year later almost to the day, protesting outside Queensland Health Department over accessing the drug within the State.

 

My son is Lindsay Carter,’ Ms Carter said, ‘and he is 16 years old. We have been travelling backwards and forwards to the United States over the last year for medical treatment for his brain tumour, chronic pain, epilepsy and nausea, and that treatment has been predominantly cannabinoid medicine. He did start off having an immune vaccine, but in the US, when his tumour appeared to be growing, we were recommended to move up to Washington state where the doctors recommended the use of medical cannabis for him. Within seven weeks of starting that treatment to his tumour had reduced by almost half the size. It had reduced by seven millimetres. We have MRIs back here in Australia that confirm that shrinkage. Last year, on both occasions when we were here for an extended period of time, his tumour started to grow again, and it has just grown again three millimetres in the last three months since we have been home.

 

‘I can give you very specific information about his treatment‘, she went on. ‘The treatment that he has been recommended in the US was a four to one ratio, which has been proven to be the most effective. Four THC to one CBD, which has been proven through research done by Dr Sean McAllister in California, where he has been doing research based around brain tumours and breast cancer. It was based on his research and was the recommendation by his doctor in the US. The research that Dr McAllister has done has shown the effects on these specific types of cancers when CBD is administered alone and when THC is administered alone and then when the two are combined together. My son’s treatment was in a number of different forms. He would be receiving an oil form ingested. He would also be receiving a vaporised form of cannabis for immediate chronic pain relief and to help with his appetite, because the tumour was causing some wasting and it was causing chronic nausea every day, and also for the side effects of the Epilim that he was recommended here, which was also causing significant side effects such as nausea as well.

 

‘My son also was being administered cannabis towards the end of last year in a patch form as well’, she continued. ‘That was not a stand-alone treatment for him. It was like a layering effect. So he would have the vaporisation, to immediately work on his pain levels and to help with his seizures, as well as the oil, and the patches, if we were travelling, for example, as a way he could manage his pain just for short periods of time. For most of last year he was having absolutely no treatment. He did not have any oil last year. We have seen his seizures increase when we comes home. Obviously, that is a big concern to us, and he is not getting seizure reduction on the antiseizure drugs. They are not getting any control of those seizures. So we have started him on some oil since we have been back this time. That has only been for a short number of weeks. The only time he has had a seizure was when he missed a dose.

 

He has been on conventional treatment, but the pharmaceutical medication that he was on was not controlling his seizures. In one instance, just before one of our trips to the US last year, they were increasing his levels of two different anti-seizure medications to the point where he ended up having bradycardia and was in the emergency department because of his heart rate dropping so low on those medications. But when we returned to the US the doctors took him off one of those medications. He had returned to medical cannabis and his heart rate was perfectly normal.’

 

One wonders if Professor Hall had been listening.

 

Evidence such as Ms Carter’s though had been presented throughout the Inquiry – both at the Hearings and in the Public Submissions received.

 

The next witness offered his evidence by phone.  Israeli-based Boaz Wachtel was MD of the firm Phytotch, a company that had merged with struggling Australian mining concern to form MMJ Phytotech, the first of the ‘Pot-stocks’ to be listed on the ASX.

 

He had, he told the panel, 20 years experience in the area of cannabis medicalisation in Israel being the initiator of that country’s medical cannabis efforts. In 1995, he’d been a public representative on the committee of the Israeli parliament tasked with exploring the issue, including the drug’s legal status and access to it by patients. The committee had recommended allowing such access for seriously ill individuals and so subsequently, Mr Wachtel had worked with the Ministry of Health on formulating strategy.

 

Given Israel arguably now leads the world where the medical herb is concerned these were probably some useful credentials – doubtless the Senators would make the best of them. He was, after all, as he said, ‘here to help so mistakes can be avoided and access to cannabis by Australian patients accelerated‘.

 

Launching into an overview of what other countries were doing he turned then to the Israeli experience.

 

There are a number of indications in Israel that are approved for patients. Currently, it is chronic pain due to proven organic etiology, orphan diseases, HIV, inflammatory bowel disease, multiple sclerosis, Parkinson’s, malignant tumours in various stages and PTSD. In Israel, as you may have heard—I am sure you have—there are a lot of war veterans with PTSD, and the Israeli Ministry of Defense, in collaboration with the Ministry of Health,conducted a number of studies on the effects of smoked cannabis on chronic PTSD patients. There were tremendously positive results from that study. Current medications do not work for PTSD war veterans.’

 

To facilitate this, the Israeli Ministry of Health had gone so far as to ‘issue a chart of basically nine categories of cannabis with different ratios of THC and CBD available to the patients, and the growers of different strains—there may be 100 strains now—would have to comply with this list‘.

 

Too easy. A Medicinal Cannabis Regulator might have come up with something like that.

 

‘We can research cannabis for the next 50 years’, said Mr Wachtel, as he prepared to wrap up. ‘But access to medical cannabis needs to be as soon as possible. Like the lady who appeared before the committee prior to me, many patients use medical cannabis illegally. The criminalisation of patients under the current control regime has to cease.  As I see it, you have to take the next step and make it available to patients as soon as possible’.

 

Which would have been very nice.