Lucy Haslam is a Tamworth advocate and mother who has campaigned for the legalisation of medical cannabis after her son, Dan, was diagnosed with terminal cancer. Dan passed away in 2015, but his story sparked a national conversation about medicinal cannabis use.
Mrs Haslam penned this letter to the editor in February 2017, one year after legislation providing pathways for patients to access medicinal cannabis passed in NSW.
ON the first anniversary of Australian medicinal Cannabis legislation which was supposed to be the “missing link” for Australian patients (according to the previous Health Minister Sussan Ley), I want to shout from the rooftops that nothing could be further from the truth. In fact, although it pains me to say it, it is coming very close to being an outright lie.
- February 20, 2017: ‘The system is set up to fail’ – Lucy Haslam on medicinal cannabis legislation
- March 30, 2016: Building on the Haslam legacy
- April 16, 2014: Dan’s crusade to legalise medical marijuana.
Off the back of strong public support for patients like my son Dan who sought relief from serious disease and symptoms with medicinal Cannabis, the Government rode the wave of popular opinion, made all the right sympathetic noises, and passed legislation to allow for the cultivation, manufacture, and research into Cannabis for therapeutic purposes.
That sounds wonderful and I used to feel very proud that Dan’s courage to speak out had some impact for the welfare of other patients. I thought it a beautiful tribute that the Legislation was passed on the first anniversary of his death.
With the clarity of hindsight, I now have a very different view. I recognise that the Government’s decision to gazump the Regulator of Medicinal Cannabis Bill 2014 was the first disaster. This Bill which was predominantly the work of Senator Richard Di Natale with cross party support from Senators Macdonald, Leyonhjelm and Urquhart had already passed through the Senate’s Legal and Constitutional Affairs Legislation Committee in 2015. The Cross-Party Bill recognised the many potential problems with subjecting Cannabis to the model of the established Therapeutics Goods Administration (TGA).
At the eleventh hour, when the Regulator Bill looked like it would be successfully passed, the Government threw caution and common sense to the wind and decided to play politics by introducing their own bill. The Narcotic Drugs Amendment Bill, which took the view that they could put a square peg (Cannabis) into a round hole(TGA), was tabled and passed instead.
This “Clayton’s victory” was quickly followed by the Government breaking the major promise that allowed their Bill to pass so quickly. The Government negotiated a trade-off with Labor. Labor agreed to not require the Legislation to go to committee, in return the government promised they would appoint an expert Advisory Council to guide the writing of the regulations. It appears deliberate that this Advisory Council never materialised, hence the regulations were written without expert advice and the problems foreseen in the crystal ball of the cross-party committee are now crystal clear!
The flow on effect from this first broken promise is enormous. We now have a system that is best described as a bureaucratic nightmare, which has done absolutely nothing for the patients which it was designed to assist and protect. It is a “mirage”!
People often say to me you must be very pleased with how things have progressed…. so let me honestly answer that right now:
Patients are still criminals. This includes the terminally ill and children with intractable epilepsy.
Patients are still reliant on the black market and will be for a long while yet. They are still taking medicine procured from illicit sources which is like playing the lottery…the medicine could be contaminated, each batch is likely to contain different cannabinoids, there is no certainty that there will be continuity of supply, there is no appropriate supervision by health professionals, there is no practical and viable alternative.
The black market is thriving; in fact, compassionate suppliers cannot meet demand. This is compounded by police raids which seize the medicine destined for patients who are reliant upon it. What happens when a child whose epilepsy is controlled by illicit Cannabis cannot access their next supply because police have confiscated it? Who will take responsibility for that?
Police are being put in an untenable position. The legislation has been passed yet using Cannabis for medical purposes still remains a crime. Police are aware of the implications of their actions in seizing medicine yet are powerless and can do nothing about it.
No Federal licences have been approved to cultivate and manufacture to provide safe products. This signals a red flag to the likely extended time frames which are liable to play out while the industry develops. The license application is only the first step in a very expensive process of having products approved for patient use, and there is no guarantee that a successful licence holder will even go on to be allowed to cultivate or manufacture anything.
The score card for the Government is looking very sad. In fact, I would say that on all aspects I give them a fail.
Now I can immediately hear the gatekeepers and authors of the regulations jumping up and down and saying “but there is a pathway for patients to lawfully access medicinal Cannabis.” I agree in theory, but the problem is in putting it into practice.
The Special Access Scheme (SAS) provides that pathway. Let me explain very briefly as the process is so convoluted that word limits make full explanation an impossible task in this context.
To begin the process the very sick patient needs to find a doctor who is happy to prescribe Cannabis and who has the time to firstly undertake the arduous time consuming process to become an “Authorised Prescriber”. This involves applications to State and Federal agencies. Once approved the doctor must then demonstrate to a committee the evidence for the patient’s illness. (A little difficult after decades of blanket prohibition making research illegal).
It should also be noted that there are no doctors in Australia with expertise in prescribing Cannabis or cannabinoid medicines. Most doctors are not even aware of the existence of the Endocannabinoid System which Cannabis works upon, which was only discovered decades after Australia signed the United Nations 1961 Single Convention on Narcotic Drugs, which incorrectly classified Cannabis as a narcotic. There was simply not a skerrick of scientific evidence to base that decision on at the time.
The very sick patient then needs to find the product overseas (bearing in mind these products are not allowed to be advertised). Once found, the patient must negotiate a price and apply to the TGA to have it approved and they must also apply for Federal and State permits to have it imported. The patient bears the full cost plus the doctor’s costs.
If they are successful in getting “Special Access” the approval only lasts three months and they are only allowed three months’ supply. Think on this for a while…A sick person must apply repeatedly placing an enormous burden on someone who is already battling illness and possibly even dying. This was the reality for a young Queensland patient with a brain tumour who took nineteen months to navigate the SAS. He is now several months into his second application and supplies are exhausted.
So, on the topic of patient access I would definitely give the Federal Government a huge fail!
As biomedicine transitions from the twentieth century population model to twenty-first century personalised precision medicine, established interests find it difficult to comprehend let alone accept and embrace the change. This mindset holds onto the false propaganda that devalued and demonised anything cannabis including its role as medicine that extended to it being classified as having no medicinal benefit in the UN Single Convention on Narcotic Drugs (this classification is now being challenged by the World Health Organisation).
The US National Academy of Sciences, Engineering and Medicine (2017) found there is conclusive, substantial or moderate evidence that cannabis or cannabinoids are effective for the treatment of chronic pain in adult, as anti-emetics in the treatment of chemotherapy-induced nausea and vomiting, for improving patient-reported multiple sclerosis spasticity symptoms and short-term sleep outcomes in individuals with sleep disturbance associated, with obstructive sleep apnoea syndrome, fibromyalgia, chronic pain, and multiple sclerosis.
Medicinal cannabis is a group of plant based whole-patient medicines (think grapes and wine varieties). The medicinal cannabis variety should be matched to the patient and their specific makeup (personal medicine) It works at a whole of patient level – the whole plant components combine to produce the optimal effect through interaction with the patient’s Endocannabinoid System.
Humans are hard wired to respond to cannabis but more than that ... is a basic human right to access medicines that are effective.
Two questions need to be asked:
To the Medical Profession – with all the international evidence and actual patient ongoing experience How can you ethically and morally not provide this effective medicine?
To all our Politicians – Why are you failing to uphold our basic human right to the dignified alleviation of suffering. Only this week the Advisory Council was announced….one year late and surprise, surprise, no experienced cannabis scientists or clinicians but plenty of cannabis opponents!
Will anyone do anything about it? Is patient welfare worth fighting for? Perhaps the new Health Minister will rewrite the disaster of his predecessor an restore my faith. If you think I am being overly dramatic put yourself in the place of the families touched by this scenario as they battle to maintain quality of life or to survive.