13th September 2017: For Suli Peek (below) and others cannabis means life or death but authorities have turned their backs
UPDATE: Tragically, Suli died suddenly and unexpectedly at the Lady Cilento Hospital on Saturday 21st October 2017. She never did get a lawful prescription for cannabis. As Steve, her father says: ‘We can’t say for certain that this medicine would have kept her alive longer but the hospital can’t say for sure it would not have. What we can say however is that she never got the chance to find out.‘ RIP Suli Peek.
Referred to, often in hushed tones, as ‘Australia’s Sweetheart’ or this country’s ‘favourite daughter’ Olivia Newton John has, over the last fortnight or so, proved herself a major and powerful if somewhat unlikely champion for medicinal cannabis at a time when – god knows – it is needed.
Only this week the California-based star, whose current struggle with cancer has made TV and press headlines on almost a daily basis, called for the plant to be decriminalised and said the Government’s move to block access by the terminally ill was ‘unconscionable.’ Her use of the medicine – which she describes as ‘much maligned’ and ‘incredibly healing’ – that too has dawn huge attention and the message of how badly Government policy has miscarried is now gradually fixing itself into the media psyche and that of the public at large.
Her support has been not unexpectedly lauded by patients and campaigners active within the space and many hopes hang on her influencing politicians when she meets to discuss her Cancer Institute with them, also this week. This kind of advocacy, if nothing else, should help further highlight the problems Australia now faces and might cause at least some embarrassment in Canberra where handling of the matter has been shamelessly, outrageously dire and of late almost certainly illegal.
During her trip, Olivia, who knows a thing or two about the cannabis plant thanks to her own close family ties to the industry, will doubtless have heard from hundreds of patients who are being denied what is freely available elsewhere. Her voice, added to the thousands crying out for a legal supply of this medicine, will in time – and the sooner the better – make the Government’s position untenable.
Patients like Suli Peek for example, whose story is worth telling in detail. Suli is nine years old and lives in Queensland with her mum and dad, brother and sister. And she – along with many, many other children – embodies all that is wrong with Australia’s so-called ‘system’ for medical cannabis – a system as failed and broken as it is blind to the needs of patients, as cruel as is it morally reprehensible. It’s made criminals of her parents and put her own life at constant risk by forcing them into the black market merely to keep her alive.
By bestowing on itself an unworkable ‘two tier’ process for obtaining the drug, Australia has ensured legal access has become a privilege granted to none but a minuscule handful – an obviously deliberate ploy to turn the plant into something it basically isn’t – a factory-produced pharmaceutical. It’s meant denying people an often-times life-saving medicine in order to force it into an ill-suited framework used for other (normally, but not always, synthetic) drugs – and as campaigners have long argued, it’s beyond wrong; it is verging on evil.
In Suli’s own case and others like her in Queensland, the matter is made even worse by a decidedly dodgy-looking deal the State’s Health Department has done with British company called GW Pharmaceuticals. The outfit is best known for its drug Sativex, the only ‘cannabinoid medicine’ listed on this country’s ARTG – the Australian Register of Therapeutic Goods. This is the schedule of all products approved for domestic use by the Therapeutic Goods Administration, the Government’s all powerful medical regulator which has also been put in charge of overseeing most aspects of ‘medical cannabis’ development and delivery in Australia.
GW are also makers of a relatively new drug called Epidiolex – a preparation of highly refined CBD, one of the active (and non-psychoactive) ingredients of the cannabis plant known to be helpful in cases of epilepsy, where the company has high hopes for its use.
The only trouble is, as many patients and carers have found, CBD alone is not always as effective as ‘natural’ cannabis products which also include THC (the plant’s psychoactive ingredient). In any case the herb itself is not a one-size-fits all kind of medicine. Its hundreds of different strains – each with its own ‘profile’ of varying proportions of distinct chemicals – mean that for the end user to derive optimal benefit a highly personalised treatment plan, based on initial trial and error, is usually necessary.
None of which is great news for GW or for the TGA’s customary approvals process both of which are manifestly incapable of delivering the goods in this way. But GW’s entire business model – and those of companies like it – is predicated on ensuring the medicine, in its natural form, is exactly what isn’t allowed. And in Queensland it’s reached an extreme.
Not long after she was born, Suli began having seizures which grew worse and worse over time – and which weren’t responsive to treatment. She was found to have refractory epilepsy – the type that affects around 35% of all sufferers and which can’t be controlled with any known pharmaceutical. In addition she has multiple other neurological issues which even now remain undiagnosed. Because of the damage her condition has caused, feeding is done with a tube that goes into a port in her stomach and at their worst, her seizures could number between 150-200 a day – each one causing irreparable harm to her young and developing brain. A few years ago however, Steve and Joyce decided to try cannabis after reading stories about its effectiveness in cases like their daughter’s – and were amazed when her episodes were reduced by well over 90%. The family accepts though even this isn’t a cure and Suli is, among other things, a patient of Palliative Care.
The cannabis does however provide her with a quality and duration of life she otherwise would never have had. And this is thanks to the illegal source they’re able to obtain from a ‘compassionate supplier’ – one of many brave individuals who risk jail for providing such oils to children like Suli for free. People like Jenny Hallam for example whose home was raided in January and whose case last week was adjourned until October. Ms Hallam faces up to nine years in prison for her ‘crime’, something Olivia Newton John was quick to condemn as itself ‘criminal’ in a radio interview Tuesday (12th September). In Suli’s own instance, her GP is completely on side with the medicine and even some of her treating specialists have in the past privately admitted the drug has been of great help. Without it, there’s no question that by now, she would have died.
Steve and Joyce first used it after a particularly distressing occasion in May 2015 when Suli suffered bleeding stomach ulcers form the hospital medications she’d been given and which had come close to killing her. From then on though, and for a full year afterwards the little girl did very well. Her seizures were under control and, unlike other drugs she’d been using, the cannabis had no side effects whatsoever other than occasional slight drowsiness. No trips to the Emergency Department were required and Steve says, looking back, it was one of the best years of Suli’s young life. ‘No-one tells you about the appalling side effects some of these neurology can have,’ he told AMCSignpost, ‘and with cannabis there are almost none at all.’
However, she did become ill the following year, in May 2016, and began seizing again. In June the hospital diagnosed severe adenovirus which quickly progressed to pneumonia. Back in ICU Suli was once more close to death and at one point stopped breathing altogether. Connected to the respirator, an EEG and with a special pressure suit on, arterial lines and a multitude of wires had been connected and she’d been given a strong drug called Propafal. Still though she was seizing every couple of minutes. At their wits’ end, Steve and Joyce couldn’t bear to watch this kind of suffering. They got out their cannabis oil but decided then if that didn’t work they’d have let Suli go. The ICU staff, reticent at first, agreed to turn a blind eye. Three doses of cannabis and several hours later the seizures had completely stopped.
The next day Steve spoke to Suli’s Neurologist, telling him what he’d done and saying he couldn’t and wouldn’t stop stop giving his daughter the oil. Staff were including the fact Steve was administering it to Suli in hand-overs between hospital shifts and the pharmacy there had it listed as her regular medication. Later the hospital management had the detail removed. Soon after, Suli was discharged with a care package called Hospital in The Home which is designed to provide intensive type treatment outside a hospital setting.
Three weeks later though she developed respiratory problems from another suspected virus so Steve and Joyce took her to Lady Cilento Emergency Department to try to find out what was wrong. While there she was put on a drip which her parents were not told contained glucose. At the time Suli was on a special, ketogenic diet; her keytones dropped from 4.1 to 1 which triggered a massive seizure so once more up to ICU they were taken where Steve, this time, was prevented from giving his daughter the oil. The seizures worsened and powerful, rescue medications were administered suitable for short term use only. But the needle missed Suli’s portacath – an implanted device through which drugs are sent straight to the heart – and the meds went into her chest tissue. This made her seizures worse still; she ended up again full of tubes and on a respirator and this time morphine was used. After about three days the tubes were removed and her seizures returned with a vengeance. Intensive Care staff wanted to restart the whole process again but Steve flatly refused to allow it. The following morning he and Joyce had a meeting with Neurology, Palliative Care, General Peadiatrics and the head of the ICU.
There Steve told all concerned he realised his daughter was dying but said he believed the medications Neurology were administering were killing her – two very different propositions indeed. He also said, for this reason, Neurology’s medications would play no further part in her treatment. ICU advised him on that basis the hospital would be reluctant ever to re-admit Suli to the Unit. If they did so they said, they ‘would not let her suffer’ but instead recommend a large dose of morphine. Steve was deeply shocked and upset. ‘I thought euthanasia was illegal in Australia,’ he told them. They replied: ‘It is not euthanasia, it would be stopping her suffering‘. Steve could hardly believe what he was hearing but it was decided that once Suli was off high flow oxygen she’d be discharged again under Hospital in the Home. By this time, badly affected by the intubation, she couldn’t swallow or cough and had a throat infection for which her GP took over the care. All these brought on more seizures but Steve and Joyce were able to manage and control them by using the cannabis oil. However, they couldn’t get hold of it legally and, worst of all, regardless of the fact it had kept Suli alive the specialists refused to prescribe it.
And because of the rules that apply in Queensland due its own legislation, her GP is unable to do so.
In fact, Queensland Health have gone to great lengths to pressurise Steve as well as other parents in in the State to use Epidiolex and have told him it’s the only cannabis medicine they’re prepared to prescribe. Though they won’t divulge details of the arrangement made with GW, the Department has in the past described it as a $6 million ‘clinical trial’ – which, with only a few tens of patients involved, makes it a pretty expensive one per capita.
Like so many others in a similar position Steve is not surprisingly deeply aggrieved at being criminalised for providing his child with the best treatment he possibly can. Technically he and Joyce could face up to 25 years in prison for doing what they’ve been doing – the same as if they were giving their child Ice. But it was when he set about trying to persuade the hospital to provide Suli with a legal supply things began to look almost sinister. After a radio interview about the family’s case in which Queensland Premier Annastacia Palaszczuk was put on the spot by a journalist, Steve managed to get a meeting with her and the State’s Chief Medical Officer Jeanette Young. Both promised they’d help by offering a number of options, which included assisting Steve to get the (illegal) oil he was using tested so he knew precisely what was in it, finding a specialist who would then prescribe a legal equivalent and then fund the treatment on compassionate grounds for the remainder of Suli’s life.
Immediately after the meeting Palaszczcuk and Young were sent letters summarising what had been said – but from thereon Steve got the cold shoulder. Worse still, when Suli’s GP contacted the Chief Medical Officer, Young denied any such offers had been made, telling him Steve would need to sort out the testing himself, and that she couldn’t help find him a specialist. Moreover he’d also need somehow to find a legal overseas supplier prepared to donate the product for free – in this instance a critical necessity since neither he nor Joyce have been able to work for some years so demanding is the care of their daughter, their superannuation long ago spent.
And the family is far from alone. Another parent, also in Queensland, herself fell foul of the Health Department and hospital strictures around Epidiolex and claims police were sent to her home for giving her child an illegal though natural product that works well. Her story caught fire on Facebook leading to unrest among advocates but more stonewalling by Queensland Health.
In Suli’s own case, it was here in the story legal eagle and regulatory specialist Teresa Nicoletti from the corporate law giant Mills Oakaley got involved, acting on a pro bono basis. Thus far she’s written a series of stinging letters to the Health Department and staff at the Lady Cilento Hospital, suggesting they’re in breach of their own legislation – forcing those concerned to re-trench. The next step, inevitably will be for Dr Nicoletti to refer the complaints elsewhere. The Health Ombudsman and even the Human Rights Commission are currently being explored and even the courts have been mentioned where some of this looks as though it will inevitably have to be resolved if Governments refuse to budge.
ABC’s Lateline discussed Suli’s plight in the first of two segments the programme did in mid-August, prompting the TGA to take the unusual step of replying, having seized on comments made in the show by pharmacognosist and cannabis expert Justin Sinclair. In it Sinclair acknowledges few formal clinical trials of the drug had taken place which the TGA promptly gave as its reason for withholding access. But he was quick to hit back with a comprehensive ‘response to the response‘ calling for current users of cannabis medicines to be treated as individual test subjects – a perfectly legitimate approach under the Government’s own evidentiary requirements. More, he listed some 54 conditions for which cannabis has been found – to one degree or another – effective.
But on this, needless to say, the TGA remained silent.
Lateline’s next outing was an exclusive. It discussed Health Minister Greg Hunt’s machinations to over-ride Parliamentary will and block the Senate’s decision to open up fast-track access to the medicine for the terminally ill. The Government had used a Statutory Instrument to deny this and were now threatening importers, forbidding them to provide cannabis products under its Special Access Scheme Category A pathway designed with that purpose in mind.
Dr Nicoletti quickly pointed out the TGA’s actions were illegal and ‘dangerous’ in terms of the ‘Executive thumbing it’s nose at the Legislature’ much to the chagrin of the Minister.
Around the same time, cannabis advocate Michael Oakley – father of Ben, who suffers the agonising Stiff Person Syndrome and is kept out of pain and arguably alive by the drug – gave a high profile interview with Channel 9 saying it was ‘harder to get than a gun.’
A follow-up story by the same journalist about patient access continued in a similar vein so, with Olivia Newton John’s intervention, the message is now getting out about what an horrific disaster the cannabis situation has turned into. As leading advocate Lucy Haslam put it recently in an open letter to the star: ‘The last time we felt that hope was just before the government showed their true colours and created the nightmarish farce of regulations that medicinal cannabis policy in Australia has become.’ The UIC founder also met with Olivia over the weekend to discuss what else could be done.
Yesterday (12th September) the Guardian reported on a Bill from the Green’s Ricahrd Di Natale forcing the Government (again) to re-open fast-track access for the terminally ill. Other experts, including Dr Nicoletti, chimed in with further strong criticism of Ministerial policy. The Greens’ own full statement is here.
If Hunt and his cronies resist such a move it will serve only to further fuel the story now unfolding in front of the Australian public – that the Government has pulled a fast one and in doing so created a dilemma that now probably only the courts or the ballot box are likely to fix.
Meanwhile, as Jenny Hallam and others repeatedly point out, patients like Suli are suffering and even dying as a result – while repeated and ever more feeble-looking claims by the TGA that cannabis can be obtained in two days grow more transparently false by the week.