When I first began lobbying politicians to legalise medicinal cannabis back in 2014, it was because I had witnessed first-hand just how much cannabis was relieving the suffering of my 24-year-old son who was dying from stage-four bowel cancer.
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My own perceptions of the harms and value of cannabis were conflicted as a nurse and mother, yet those perceptions changed swiftly as I watched on. I saw Dan gain some long-lost quality of life, I saw him less frequently admitted to hospital, and I saw that he had some control back amidst a dire diagnosis.
I was relieved and proud that Australians recognised that this was a discussion about compassion and relief of suffering - they made a stand and supported us and the many patients just like Dan. A compassionate Australian society quickly took the debate about legalising medicinal cannabis out of the shadows and put it up for discussion around the dinner table.
A very positive cross-party bill was put together under the guidance of then head of the Greens and general practitioner Richard Di Natale. The talk was that there had rarely been a cause that evoked such widespread support from all sides of politics, and The Regulator of Medicinal Cannabis Bill 2014 looked like being a success. The bill sensibly recognised that cannabis was not like other single-agent pharmaceuticals, and it was worthy of a special set of regulatory controls that could accommodate the chemical complexity of the plant ... but then it became political.
The regulator bill was thrown out by the previous Coalition government, and instead they chose to amend the Narcotic Drugs Act 1967. Medicinal cannabis became regulated via the Special Access Scheme and it was put into the approved-yet-unapproved pigeonhole - a regulatory limbo that meant that it was tightly controlled, access was restricted and full costs were to be borne by the patient.
The prohibition of cannabis research over many decades ensured that the evidence required for registration of products on the Australian Register of Therapeutic Goods was scarce and therefore cannabis was unlikely to be subsidised on the Pharmaceutical Benefits Scheme any time soon. The reality of that move took some time to sink in, but now, almost seven years later, the predicted problems of that political move are playing out for all to see, and the many patients who could benefit the most are frequently left behind due to unaffordability.
Nothing about legalising medicinal cannabis has been easy. Shrouded in bureaucracy, with an access pathway that was not fit for purpose, together with the lack of a public awareness campaign, the ongoing effects of bias and stigma that is a result of lack of education, and the high costs to patients, the road has been long and arduous.
Despite all this, the numbers of patients using medicinal cannabis continues an upward trajectory, confirming what most of us realise by now: that it is a valuable therapeutic medicine for many.
Now, in 2022, almost seven years post-legalisation by the previous government, and eight years since Dan's death, I find myself heading back to Canberra to ask the Labor government to address what the Coalition government failed to address: cost and affordability, so that medicinal cannabis does not remain a medicine for the wealthy.
Few politicians seem to understand that passing legislation does not equate to access for many thousands of Australian patients. The current Health Minister, Mark Butler, appeared to understand this when in opposition.
In 2021 he said "There still remains much to be done in the emerging area of the therapeutic use of medicinal cannabis. Frankly the government doesn't appear to be doing much in that area, particularly in the area of improving access for patients across the country to safe, affordable and effective medicinal cannabis products."
To that comment I say here, here!
You are spot on Mr Butler, and now you are in a position to make change and to help those many Aussie patients who remain waiting, often suffering in silence, and often risking criminality to relieve their or their loved one's suffering.
Recently, United in Compassion, the charity that I began with Dan in 2014, along with the Australian Medicinal Cannabis Association and the Society of Cannabis Clinicians Australian Chapter, invited thought leaders and key stakeholders to the table to try and pinpoint the numerous problems hindering patient access to medicinal cannabis, and more importantly, to identify potential solutions to be provided to government.
Many dilemmas have plagued patients and industry from the outset. They are clear to see although not so straightforward to resolve. But they are solvable. They do require a renewal of commitment from the Labor Party and a willingness to engage with the community to create meaningful change for genuine patients. Now that Labor is in government, there is hope once more that challenges can be overcome if the willingness to do so still exists.
We come back to Canberra, with hope that a fresh face in the health ministry will be prepared to engage, and to tackle, these ongoing problems.
Sadly, I don't come with Dan by my side, but I do come with some heavy artillery - I come with the expertise of cannabinoid scientists, specialist health practitioners, lawyers, the support of the nursing workforce, experts in the industry and most of all, carrying the voices of those patients left behind.
Mr Butler, you recognised and articulated the problems in opposition. As you said patients are worthy of more than mere symbolism.
Please be the hero that our Australian patients need and deserve.
- Lucy Haslam is the executive director and co-founder of United in Compassion.
