17th December 2017: Compassionate access campaigner battles by telling the truth
NOTE FROM SITE ADMIN: AMCSignpost has been silent for several months. Not because we’ve given up or been absent, but because of a task that’s been under way for a while. The below gives some explanation – assisting Lucy in an endeavour we’re hoping to have finished early next year. We’ve been watching developments though, and keeping scrupulous notes as Australia’s medical cannabis saga unfolds. Hopefully – in the not-too-distant – much of these will see light of day. Until then, expect us to go a bit quiet again…but in the meantime, we’re pleased to be sharing a small taste of what’s likely to follow. For now though – a very Merry Xmas and Happy New Year to all our friends. See you at the other side of the project!
UPDATE 18th Dec: One day after this interview was published, and as predicted by Lucy, the first of the ‘Official Guidance‘ appeared from the TGA – this one aimed at patients. Full of nonsense, it comes within days of the World Health Organisation suggesting CBD should be made available without being scheduled and which makes a mockery of this latest outing from the TGA. As the below article makes clear, the ‘Guidance’ was created by some the most anti-cannabis ‘experts’ to be found anywhere in the world. No surprise then the document reads as it does.
For nearly four years Lucy Haslam, mother, grandmother, ex-nurse and patient advocate par excellence has been the embodiment of medical cannabis and its legal reform in Australia.
These days though she says she is ‘saddened’ and ‘feeling angry’.
Saddened, she says, over the way this country – from such a promising start – has handled the roll out of a system supposedly ushering in both the plant’s cultivation and access to it by patients since legislation was changed back in 2016. And angry at the lies being told – by Governments and their bureaucracies – in order to throttle that access while appearing to do something positive.
‘2017 has been a terrible year where cannabis is concerned‘, Lucy says. ‘There’s a national policy quite deliberately in place to prevent wider use of the medicine. It’s regardless of any legislation or regulation; just ‘policy’, simple as that. And it desperately needs to be changed. Which is what we’ll continue to fight for next year.’
The founder of United in Compassion, one of this country’s most vocal cannabis advocacy groups, is talking from the small office she’s created in an outbuilding at the back of her home in Tamworth, NSW which serves as the organisation’s headquarters.
But what does she mean when she says ‘fight’?
‘We’ll throw some light where it’s not wanted for one thing,’ she says. ‘About 18 months ago I was halfway through writing a book. Then I stopped. I don’t know why, I just did. But now I’ve gone back to it, and let’s just say I know a whole lot more now than I did when I first began – and that was when Dan was still with us.’
She’s speaking of course about her late son, who, at the age of just 20 was diagnosed with the bowel cancer that would ultimately end his short life. Cannabis, Dan found, was the only substance to give him relief from the unbearable effects of his radical chemotherapy, but the use of which made him a criminal.
It was this obvious injustice – employing a drug found to be so effective in such awful circumstances, but which was completely illegal – that led the Haslams to begin their campaign, in a story that’s become almost legendary.
Countless TV appearances and a 250,000-strong petition later and the Turnbull Government, in the face of enormous public pressure brought about largely Dan and Lucy’s efforts, passed the Narcotic Drugs Amendment Act in February 2016. It was done, cynically, on the anniversary of Dan’ death a year earlier and when it went through – with unanimous support in both Houses – Lucy described the event as ‘pretty amazing.’
But that’s not what she thinks any more.
Those who’ve followed this country’s medical cannabis ‘journey’ will be aware the policies and Government action surrounding it have been what any normal person would call reprehensible. Far from marking ‘an historic day for Australia‘ and ensuring ‘genuine patients were no longer treated as criminals‘ as then Health Minister Sussan Ley put it the day legislation was passed, the drug is as difficult to get hold of (legally speaking) as ever. And patients – including children – have died.
‘I had faith in my Government,‘ Lucy says. ‘Blind faith. You do, don’t you? If they tell you they’re going to do something, that they’re going to support you then that’s what you expect to them to do. We wanted a scheme based on compassionate access, on person-centred medicine and that’s what I thought we’d get. What we’ve ended up with is probably the worst system in the world. Australia is the only place where a system for medical cannabis supposedly exists but where no-one can get medical cannabis. It really is pretty disgusting.’
So what does she think needs to happen? What can be done to improve the lot of the thousands across Australia now using the drug for medicinal purposes – all bar a minuscule handful sourcing it from a vast and expanding black market?
‘I have a few ideas,’ Lucy says, ‘and the book will be part of that mix. Those responsible for this mess know exactly who they are and what they’ve been up to and it’s about time some of that was made public. I’ve done my utmost to work co-operatively until now yet I feel I’ve been largely ignored and the public has been massively duped. Maybe sharing a bit of this background might certain people into re-thinking policy, who knows?‘
If anyone’s privy to the kind of ‘background’ being referred to it’s Lucy. Fom the outset she’s been – and has remained – in close touch with politicians, Government officials, public figures and cannabis experts worldwide so has a few tales to tell. Only last month it was announced former NSW Premier Mike Baird and ‘Australia’s Sweetheart’ Olivia Newton John had become Patrons of UIC.
So the book then. Will she give everyone a sneak preview?
‘It’s Dan’s story,’ she says, ‘and mine. But it’s a lot of other people’s as well. Take Suli Peek for example – her treatment by Queensland Health and the Lady Cilento Hospital was beyond contemptible. I think it was possibly criminal. That child died without being given the opportunity to find out whether a legal supply of her medicine might have kept her alive a bit longer. We can’t say for sure that it would, but doctors can’t say it wouldn’t. What we can say is she never had the chance to find out.’
Suli’s plight was covered by this site in September, just a few weeks before she passed away, one of several children ‘compassionate supplier’ Jenny Hallam identified in a powerful video made about some of the families she’s helped. Hallam, whose home was raided at the beginning of 2017 is still awaiting trial for her ‘crime’ and could face jail time for trafficking drugs.
‘I won’t give too much away,’ Lucy says, ‘but it’s full of anecdotes that aren’t as yet in the public domain and which are likely to raise a few eyebrows…‘
‘Well, here’s an example,’ she says. ‘It shows you the kind of mis-information being spread and the sorts of people that do it, thought it’s rather surprising in this instance because the credentials involved are impeccable. The individual concerned should have been bigger and better than this.‘
She’s referring to a piece in the latest edition of the popular science magazine Cosmos, edited by Elizabeth Finkel, who authored the article in question. Titled ‘The Bad Science of Medical Cannabis‘, it was in some ways reasonably informed – which you’d expect from a high ranking scientist and admirably qualified academic like Finkel. But it was damning about ‘natural’ cannabis, describing it as ‘medieval medicine – akin to boiling willow bark to treat headache’.
‘In the 29 US states that have legalised it,’ Finkel wrote, ‘dispensaries that resemble something out of a Harry Potter tale sell candies, cookies, oils, ointments and joints to an estimated 2.3 million Americans. As to their exact medical benefits and risks, no one knows.’
‘But here’s the thing,’ Lucy says, ‘the argument hung largely on a couple of highly negative remarks attributed to Dedi Meiri, one of the foremost researchers in the world when it comes to cannabis as a treatment for cancer. Dedi, and the Israelis in general, really are blazing a trail in this sphere,’ she continues, ‘so when I saw what he’d apparently said my heart literally sank. And then the alarm bells began seriously ringing.’
Finkel had Meiri saying ‘Even now I am reluctant to tell people I work on medical cannabis,’ and that he was ‘not pro-cannabis; I think 90% is placebo,’ – kind of important when coming from such a giant at work in that crucial space. And especially true when the article is picked up and used by other media outlets both here and all over the world, including an interview with Finkel on ABC radio’s Night Live just recently.
‘I know Dedi quite well,’ Lucy goes on, ‘he spoke at our last Symposium, so I was amazed when I read the Cosmos piece and I dropped him a quick line. This is how he replied:
‘Happy you asked me these questions,’ Dedi wrote back. ‘The title of the article is: ‘The Bad Science of Medical Cannabis’ – what do you think I think about this? I was shocked to read it and to realise how much Elizabeth hadn’t understood what I said – and her use of half-sentences.
For example, I said I still see myself more of a cancer researcher than a cannabis one so when someone asks me what I do I tell them I run a cancer research lab. From that we end up with ‘even now I’m reluctant to tell people I work on medical cannabis‘!
I told her many times ‘even if 90% of what people are saying about cannabis is placebo, still 10% (non-placebo) is huge. There are so many indications that cannabis can help with, even if just 10% are real it’s still the biggest thing in medicine in the last 100 years.’ From that we got ‘I am not pro-cannabis; I think 90% is placebo.‘
I’m totally upset about this article‘, Dedi told me, then went on to blame himself for not looking at it before publication because of time constraints. ‘It’s my fault,‘ he said, ‘and this is my penalty for not reading it first. Though when it came out I was very angry and I’m totally unhappy with the way my views were presented, I’ve learned a lesson and I’m very sorry for the outcome.’
Interesting, especially when it turns out Finkel is involved with an outfit called AUSiMED, which raises funds to support scientific collaborations between Australia and Israel. She’s also the wife of Australia’s multi-millionaire Chief Scientist, so chances are her views are shared in some fairly high places. No wonder we’re where we are now.
‘These are the sorts of distortions that happen every day of the week,’ Lucy says, ‘though this one’s particularly egregious. Finkel would no doubt be acutely aware of Israel’s ‘Green Book‘ – official guidance for GPs from the country’s Ministry of Health about prescribing cannabis to the 27,000 plus patients already receiving it. High-ranking TGA representatives were given a copy of this personally by Israeli officials during a visit – I saw it myself – yet it’s been completely ignored.’
Which is significant since Australia is about to be handed down its own ‘National Clinical Guidlines’ which Lucy and others are dreading. ‘It was put together by some of the most rabidly anti-cannabis researchers and academics in the world,’ Lucy says, meaning the ‘Foxes’ this website discussed as far back as January, set to guard the ‘Henhouse’ of medical cannabis. They include Wayne Hall – a Prince among the ‘Reefer Madness’-type propagandists and Jan Copeland, ex-Head of the country’s now defunct National Cannabis Prevention and Information Centre. Hall’s work has been described ‘deeply flawed‘ while Copeland once said of cannabis ‘The burden of disease… due to its use and dependence is estimated to be greater than that of HIV, Hepatitis B and Hepatitis C combined.’
Needless to say, as one wag wrote on this website, ‘the Australian government spent $40 million on Prof Jan and NCPIC over the next eight years and, during that time, there was not one death attributed to this scourge of humanity.’
Other stories that spring to Lucy’s mind are the fact that Mike Baird, when Premier, was deliberately thwarted in his efforts to provide wider patient access by then Health Minister Jillian Skinner abetted by various officials. ‘How can we stop this?’ Skinner apparently asked, to be told: ‘Just tie it all up in clinical trials and base access on the outcome of those‘ – which of course is exactly what happened, leading to situations like the one described in this week’s Daily Telegraph. It had politicians running for cover and bureaucrats babbling excuses (completely misleading but naturally) on 2GB Radio within hours.
‘I also know that Labor, if elected, plan to leave cannabis with the TGA,’ Lucy says, ‘so I’ve written a bit about that. And when those National Clinical Guidelines hit, politicians of any flavour will have the perfect excuse to keep access completely fettered. The ‘experts’ will confirm there’s no evidence while over-stressing the risks. And they’ve been so sneaky about it; look at the ‘expert advisory thing….’
She’s talking here about the so-called ‘Australian Advisory Council on the Medicinal Use of Cannabis’ – a group of political appointees gathered by the TGA to give input on policy matters. It again includes Professor Wayne Hall as well as other equally hostile figures – and was the subject of another piece that appeared on this website, this time in February.
Only recently documents were received by AMCSignpost pertaining to the Council obtained under the Freedom of Information Act which we happily shared with Lucy in the course of her writing.
Though heavily redacted (and thus subject to an immediate appeal) still, some of them show just how conniving the top brass involved in all of this are, as one missive between the TGA’s head John Skerritt and his lieutenant Bill Turner – surely the Laurel and Hardy of Australian medical regulation – amply illustrates:
Discussing, from what we’re able to tell, the appointment of the Council’s Chairman, here’s Skerrit’s directions to Turner:
‘I need more advice as I have serious concerns about signing the submission in its current form…’ Skerritt says. ‘I do not think it appropriate that a Minute should refer to bias/favouritsm. We should be silent on this. We should also be totally neutral on the langauge re. the nomination using only the passive voice so as not to suggest it is a nomination from me….‘
They also show how Helen Zorbas from Cancer Australia – who sits on the Council as one of just two ‘patient groups’ supposedly being represented – was at pains to explain her organisation was actually no such thing (and as we also pointed out at the time).
‘I think it important that neither I nor Cancer Australia, as a government agency, is portrayed as representing cancer consumers,‘ Zorbas said. ‘I presumed I was being invited for my expertise in evidence based practice and policy in cancer control,’ she told handlers within the TGA, though it fell on completely deaf ears. The organisation continued to lead the public and press to believe otherwise.
The documents also revealed Wayne Hall had provided advice to the Queensland Government – which would later produce its own Guidelines for the prescription of cannabis. They stipulated ‘no THC for those under 25 years of age’ thus in effect preventing children like Suli Peek from obtaining a legal supply. Some people, it seems, really do have blood on their hands as Derryn Hinch told the Senate in an October debate on proposed legislation to relax the TGA’s Category A access pathway.
These are just some of the least explosive from Lucy’s long list of tales – from how she was duped into brokering a deal with Labor to facilitate passage of the Narcotic Drugs Amendment Act to the real story of how a planned farm to grow cannabis fell through, there are some real surprises in store.
‘Looking back, going through my diaries it’s surprising how much there is to tell,‘ she says. ‘I’ll try and include as much as I can but meanwhile, we’ve still got an uphill battle’.
She’s particularly dismayed, she says, by the in-fighting between other cannabis activists whose numbers have swollen since its use as a medicine was given such a high profile from 2014 on.
Facebook, has, over the last several months, been like a war zone, with petty rivalries, personal dislikes and vendettas being aired publicly often accompanied by some outrageously venomous accusations.
‘This ought to stop,’ she says, ‘it’s making us all look ridiculous. The John Skerritts and Bill Turners of this world who look at the pages concerned must be rubbing their hands at all this. It’s total disorganisation. I’m not asking anyone to join UIC or anything like that. What I am suggesting is keep whatever grievances there are out of the public domain. Trying to score points and abuse others as some have been doing is totally counter-productive and makes it look like the whole movement’s imploding when it actually that isn’t the case, as I hope we’ll be showing in 2018.’
‘I’ll never give up on this,’ she insists. ‘I’m 55 now, I reckon I’ve got another 20 years in me and if that’s what it takes I’ll spend that time fighting for what’s right. I really believe we’re going to get there. Good has just got to win out.’
How then, with so many obstacles, does she believe that might happen?
‘It’s partly a struggle between the educated and the uneducated,‘ she says. ‘Where medicinal cannabis is concerned, you tend to find there are two kinds of people – those who know nothing about it and believe all the nasty propaganda they’ve been fed and those who begin to educate themselves and find out – and as soon as they do they become converts.’
To these she could easily have added a third – those who simply refuse to accept facts when presented to them – those perhaps like Wayne Hall and Elizabeth Finkel.
What’s really needed Lucy believes, is an Australian Sanjay Gupta – the American doctor and CNN’s chief medical correspondent who, in 2013, very publicly apologised to the entire nation for getting things wrong about cannabis. In 2009 he penned an article for Time Magazine called ‘Why I Would Vote No On Pot‘ but subsequently changed his opinion.
‘I am here to apologise,’ he wrote. ‘I apologise because I didn’t look hard enough, until now. I didn’t look far enough. I didn’t review papers from smaller labs in other countries doing some remarkable research, and I was too dismissive of the loud chorus of legitimate patients whose symptoms improved on cannabis.’ And he went on to admit: ‘We have been terribly and systematically misled for nearly 70 years…and I apologise for my own role in that.’
But set against such positions ‘there are some serious forces at work,’ Lucy reckons. ‘Drug companies in particular help shape medicines policy in this country and cannabis is no exception. We need to understand what’s going on. It takes corporations many years and sometimes hundreds of millions of dollars to bring a drug to market. They’re not just going accept something like cannabis slipping through all the hoops they’ve had to jump through unchallenged, especially if it eats into profits. And Australia accounts for just 1% of Big Pharma’s business globally, yet companies like Pfizer are among some of this country’s largest. Imagine if they simply turned round and said ‘ok we don’t want to market our products here any more because of medicinal cannabis‘. That’s probably what the Government is scared of and possibly the kinds of threats such companies could make. Don’t forget all of them have highly resourced ‘Market Access Divisons’ whose sole job it is to – one way or another – buy influence. Unless we recognise that, and realise quite what a spot politicians are in, it’s unlikely we’ll get very far. I hate the situation, but it’s a real one and there actually aren’t easy answers. And that’s just one of the issues we face.’
So what then might be the way forward?
‘Well look,’ Lucy says, ‘Iain McGregor of the Lambert Initative recently estimated there were 250,000 patients using the drug medicinally. That’s quite a lot and the genie can’t be put back in the bottle. There’s nothing this Government has done that can’t be adjusted – though we might need a new one to do it. What I do know is, there’s not a single country that’s legalised medicinal cannabis without its own specialist office or organisation to deal with it. There’s no reason, if things are done properly, why such an entity shouldn’t exist as a branch within the TGA but the political will is needed to make it happen. And its purpose should be to facilitate cannabis availability not prevent it. What’s needed are wide n=1 trials for everyone currently using cannabis medicinally – while providing them a legal supply. There was a great piece in Medical Republic on this just recently. Policy-makers could start off by reading that. Whether it’s through the Courts or the court of public opinion, whether it’s at the political level or whether all three, which it probably will be, we just need to keep up the pressure. The argument’s already been lost by our opponents in terms of whether the drug can and should be used as a medicine – that’s why they’re forced to lie all the time. And it’s also why we need to be better organised if we’re to continue. But it needs to be done as sanely and as reasonably as possible, even when we have cause to embarrass them.‘
By ‘them’ Lucy means both politicians and their bureaucrats as well as those in the medical profession enjoying the largesse of Big Pharma. ‘It’s not going to happen overnight,’ Lucy says, ‘especially with those forthcoming Clinical Guidelines. So we need to be ready and we need to be able to challenge – and be able to do it on all fronts. It’s a big task, but it’s worked overseas and we’ve done it once here already so it’s certainly far from impossible. I wish we weren’t in this position but there are people too sick to fight for themselves and I’m grateful to have people around me obviously on the side of the angels.’
And if Dan were here, what would he make of it all?
‘He would be devastated,’ Lucy says. ‘He’d be very angry. And he was not someone who’d get angry easily. He’d think it’s despicable, what’s happened. I often feel like he’s with me though, while I’m doing what I’m doing. For that reason I’ll never give up.’
And there’s something about her that makes you just know that she means every word.