I want to talk about the Narcotic Drugs Amendment (Medicinal Cannabis) Bill 2021 in human terms, with the experience of one family in my electorate as an example. Stephen Taylor has two daughters now in their 20s, Morgan and Ariel, who both suffer from the chronic autoimmune condition Crohn's disease. Mr Taylor and his wife, Karen, spent many years watching their suffering, before he made the decision to grow cannabis in his backyard to help his daughters.
The sisters had been repeatedly hospitalised with Crohn's disease. They had serious side effects from the pharmaceutical drugs. Ariel had her colon removed, and Morgan had a stoma bag attached to her small intestine at the time of the court case—he did grow the cannabis, and he did get charged. He entered a not guilty plea and, without spoiling the end to the story, I want to say that he was given a good behaviour bond and didn't face any jail time. But the point is that he could have, and he spent many, many months, and his family—I had discussions with his daughter Morgan about it—were in absolute horror at what the consequences might have been, when he was doing something that was in the medical best interests of his daughters. When he was defending the case he said: 'I honestly believe it's our human right. It's proven worldwide, and there are so many other families who are hoping to access cannabis. That's what we're fighting for. We will get to the truth behind it.'
Stephen and his wife had started researching the uses of medicinal cannabis when they couldn't find a doctor willing to take on the extensive TGA process to legally access medicinal cannabis. They both saw this as the only thing they could do, and they chose juicing because it is associated with greater access to the healing cannabinoids than more common forms of medicating. So it was done by looking at the best research they could get their hands on. They also saw really terrific effects on their daughters, and they continued using it.
I tell that story because it is just an example of what many families go through in the Blue Mountains and the Hawkesbury. They still don't feel it's something that is necessarily widely understood or accepted, because there is still such a stigma around people accessing cannabis. It shouldn't be hard. This should be like any other medicine, used for its therapeutic purpose in the form that works best. But unfortunately this legislation does very little to increase access, which is why I support the amendment moved by the shadow health minister, Mark Butler, to highlight our concerns about the slow pace at which this government is moving on something so fundamental—in Mr Taylor's words, a human right to access a medication that can alleviate symptoms.
I first got to understand how medicinal cannabis works thanks to another constituent in my electorate, who happens to be one of the leading experts working at the Lambert Initiative for Cannabinoid Therapeutics at Sydney university, Professor Iain McGregor. I was privileged to be able to work with the Lambert institute team when they were just establishing, a few years ago, thanks to a very generous legacy that they were given by the Lambert family. Professor Iain McGregor estimates that as many as 100,000 people in the country may be using illegal cannabis for medical problems because it is so hard to access legally. He describes a massive discrepancy between what Australians are doing covertly and the overt approved system.
I was on a Zoom with a group of people a couple of weeks ago. The words that were said about this issue several years ago still apply today. Cannabis is still very difficult to access. I want to go through some of the things that are proving problematic. Professor McGregor makes it very clear that juicing cannabis gives a very different cannabinoid profile than smoking cannabis. There might be some people who still don't quite see the difference. One is administering, often as a liquid, for medicinal purpose, as opposed to recreational use, and of course this legislation is not about that. We are talking about this in the context of medicinal cannabis. The science behind it, as Professor McGregor says, is that juicing is a positive thing to do, because you don't get nearly as much of the intoxicating element, which is the THC, and you get another component of the cannabinoid, which is the THCA, which has very strong anti-inflammatory properties in the gut. I don't think anyone should be in any doubt as to the variety of medicinal effects that medicinal cannabis can have. There is ongoing research, and I would absolutely hold the view that we need to keep researching and keep investing in research so that we continue to understand the what and where of how this can best alleviate pain and discomfort—and we're talking for people whom, often, nothing else will help.
Since 2016, when we first had a framework around medicinal cannabis, industry members have said that they have encountered a number of challenges with the licence and permit scheme. Only a very small part of that issue is addressed here today, with the single licence for production. There are organisations still who have had applications pending for years—some for more than two years—and industry members have reported delays, inconsistencies and an overall lack of transparency in the process. So they're the big systemic issues, and they have made it much harder and, more importantly, more expensive and riskier for Australian companies to cultivate and manufacture medicinal cannabis. These issues have delayed the widespread availability of an affordable Australian-made product.
If this legislation takes a tiny step towards making it more accessible and more affordable to grow and produce, that's a good thing, but there are so many other elements that need to be fixed. Fixing the licensing issues, by making it easier for companies to operate, should ultimately translate into a higher-quality and lower-cost medicine for Australian patients. But that doesn't mean that patients will be easily able to access it. At this stage, until products are approved, there's the Special Access Scheme—I think it's called the Special Access Scheme because you have to be pretty special to be able to work your way through it, for a start. It's described as being for, I think, exceptional circumstances, and all approved options have to be exhausted before doctors can even apply for access to the product.
The powerful words that have been used when there have been hearings and reports on this come from a mother—from Lucy Haslam, the director and co-founder of United in Compassion. Her experience is a lived experience; it comes from the experience of her son Dan. She talks about things that we all know:
The process is too protracted, the products are shrouded in mystery, doctors can't advertise they're prepared to prescribe and patients still find it easier to go to the black market.
That is not something that any of us here would be wanting to see happen, so to put things in place to make that not the case is absolutely vital. Her criticism of the government is that it does talk big about this being a potential export industry, saying that we could be potentially one of the biggest exporters, but you have to make it so that your own patients in Australia can have an easy path to access it. We shouldn't make it easier to export it than to allow access to it here.
The issue around access is really—and I think we are seeing it in this bill—the government dragging its feet on it. I would certainly like to see it made much easier. It is disturbing when you talk to people working in this area and they tell you that the illicit market is booming and that patients are still being locked up because they can't afford to access it or can't achieve legal status to access it. There is a view that some specialist clinics are essentially extorting patients, because they have made a business out of doing the applications that most GPs are not necessarily equipped to do or find very challenging to do in the time they have available. That won't be the case with every GP, but it is certainly a specialist area. Until GPs are given the support they need to be able to go through the process, it is a complex route, and supply to patients through the legal route is inconsistent. As Lucy Haslam says, she is fairly certain that, were it any other medication, it would be immediately addressed by the Therapeutic Goods Administration at the behest of the government.
There is another group of people for whom this can be a really useful medicine, and that is veterans who are suffering PTSD. Lucy Haslam made the point in the United in Compassion submission that she is still contacted by veterans who cannot got DVA to cover the cost of legally prescribed cannabis where it's prescribed for PTSD. DVA will sometimes fund it, if it's prescribed for pain, but not for PTSD. This is a very narrow way of thinking what a medicine is for and what it is not for. The consequence of that is that veterans are being charged with illicit use or, worse still, with criminal convictions for doing what they have to do. They are doing what they have to do to try and deal with the consequences of what they experienced in their service to this country. The very least we can do is ensure a legal pathway for the alleviation of their symptoms where medicinal cannabis is effective for that.
There is another group, and I don't think I'm the only one who has had contact with them—that is, the parents of children with epilepsy. There are so many stories and examples of young children, particularly those with intractable forms of epilepsy, who actually rely on a friendly market supplier because the hospital system just doesn't know how to fund and access the product, other than a very few deals that have been done. It isn't one-size-fits-all.
The work of the Lambert institute is so important in identifying the different forms that medicinal cannabis can take. It's really looking at the quantities, the type, the method of administration—all of those sorts of things we're building a body of research up about—but we need that to be reflected in the legislation that we pass here. And we need access to be made easy so that, as science develops, people don't have to come back to us for additional legislative support. We need something that is forward-thinking in the way that it looks at things so that over time, as we learn more about medicinal cannabis, we know that patients' needs can be met.
At the end of the day, the problem that I see with this bill is that it doesn't address directly these issues of patient access or even of some of the stakeholders who are involved in that process. I was hoping we would see a bill that would make it easier for patients to access it. For those who have advocated for this—those who, like Mr Taylor, have spoken out about their family circumstances, have revealed really private, personal details about what they have experienced, who have actually been willing to be out there and be test cases in the courts on this stuff—you would really hope that we could do better by them than just a few administrative things. It is time to do something comprehensive. I know I am probably asking a lot from those opposite, but it's time for some forward-looking vision. I don't see a lot of that from them, but surely this is one occasion where we can really put the needs of patients ahead our ability to be able to say, 'We've got rid of a bit of red tape.' Let's not just get rid of a tiny bit of red tape. Let's make it so that people who need this medicine can access it when they need it without jumping through a million hoops, without having to turn to the black market, without having to grow it themselves and put their families at risk.