Sharon Bird (Cunningham, Australian Labor Party, Shadow Minister for Vocational Education) Share this | Hansard source

I am pleased to be able to join colleagues from both sides of the House today to support the bill before us, the Narcotic Drugs Amendment Bill 2016. Firstly, I want to outline what makes me such a passionate follower of this issue of the development of medicinal cannabis and availability to Australians. Like the member for Petrie, it is direct personal experience with a local constituent. I think that is a common experience many of us have had over recent times. Then, for the interest of those who might look at this speech afterwards, I will go through some of the details of the bill so that people are conscious of what it does.

On 18 May last year I had a young man and his dad come to visit me. The young man's name is Ben Oakley and his dad is Michael. They came to talk to me at that point in time because Ben suffers a very rare condition. Some other speakers here have mentioned him as well, because he was in parliament with his mum and dad on the day that this bill was introduced, because they have been following the issue so closely, and he did some media. So some other parliamentarians had the opportunity to meet him. I had a short opportunity in the Federation Chamber to put on record my great admiration for his bravery and also the great clarity with which he explains his experiences and why he is campaigning on the medicinal cannabis issue.

In May last year Ben and his dad came to see me because they were organising a fundraising walk to help with some of his costs. At the time, he was not using medicinal cannabis. So that was not an issue that was on the radar. It was really just to make me aware of his condition and what he was living with and to see if I could assist with their fundraising efforts, which I was pleased to do. I want to use Ben and his dad's own words in describing their experience, because I think they speak more powerfully than anything I could say. If people want to follow Ben's story, he has a Facebook site called Roll On Ben Oakley. It is a very powerful way to get his story out there. I think it is very encouraging how positive he and his family have remained.

Ben's dad, on the Roll On Ben Oakey Facebook site, describes what actually happened to Ben, and these are his words:

On the 21st November 2012 my son, Benjamin Oakley collapsed after a cycling training ride, at the time we all thought that he had pulled a muscle but this was not to be the case. Many months of pain and discomfort were to follow without explanation as to what had happened to my fit and active boy. Ben has Stiff Person Syndrome, a 1 in a Million Neurological Disorder, in Ben's case it effects his mid spine and has left him in constant pain, it appears that Ben is the youngest person in Australia at this time with this horrible process. Ben has gone from a Cyclist and Triathlete to a wheelchair for anything more than a very short distance. Please watch the video attached to this post, it is Ben's story, in his words, it is very hard to watch, it's harder to live with! Ben has acute, full Body Muscle Spasm, even amongst SPS Sufferers this is rare, the Spasm appears similar to an Epileptic Seizure but Ben remains fully alert, aware and in the most intense pain!

Ben has described what happens as imagine taking a Tazer and holding it against your spine! A few weeks back Ben had the worst day anyone could possibly imagine, over the space of 9 hours Ben had 61 of these spasms, the longest continuous spasm lasted for 2 hours. Each Spasm is accompanied by not only intense pain but also huge increases in Ben's Blood Pressure (recorded at 208/190, more than enough to cause a Stroke or Heart Attack!) and his Body temperature goes very high (recorded at 41.5). A spasm can be caused by a sudden scare, a cough, a sneeze, being upset or emotional or sudden intense pain. Any movement can and does cause Ben pain and this obviously could cause him tom have more spasm, Ben has gone from an active person who would rarely sit to not able to move without risking a life threatening Spasm. The only positive thing I can say that has come from this is the fact that Ben is who he is! He always has a smile on his face, he is always up for a challenge and he will always go that extra mile for anyone!

He goes on to explain that they were holding a fundraiser to raise charity money. Further on in the report, he made the point:

Treatments that exist are very expensive and not always effective. We are trying to make not only Ben's life easier but also others with this Rare Disease.

Their charity is called Drop a Dollar for Rare Diseases. At that point, as I said, they were working to raise funds.

I have to say, it was a very moving experience to meet a young man who, in his late teens, had been struck down in the way Ben was and yet who had so profoundly determined to wring the most out of every day that was before him to try to get back to some sort of normal life.

Later last year, Ben and his dad came to see me again. I invited my colleague and neighbour the member for Throsby to come along because I knew that, in his shadow portfolio, he had been doing a lot of work on the area of medicinal cannabis. Ben and his dad came along to report to us that Ben had commenced using medicinal cannabis—and what a profound difference it had made in his life. On 16 December, they updated their Facebook post. This is what Ben's dad said at this point in time:

Still don't know how he does it!

Pushing more and more, a little more each time (something we can all learn from!) Ben has attended his usual physical therapy yesterday and broken his own record, by a HUGE 11 Seconds!

rolling around on the running track at Beaton Park in his wheelchair. If that was not enough, for the first time in over 3 years Ben went out without his Wheelchair, attending his Osteopath in Corrimal, Ben walked in, got on the table, attended his usual treatment then walked back to the car.

This might not sound like much to most people, it is a small victory, but remember that Ben has Stiff Person Syndrome and been using a wheelchair for 3 years now for anything more than a short distance, even when he does go out for a walk he has the chair close by when the pain get too uncomfortable and he has to sit down.

Yes, it remains a painful activity. As most people who live with long term pain will understand, you have to push yourself to get things done, to live as best you can. The hardest part for Ben is if he ends up in too much pain he can spasm and as those who have seen both on this page and personally it is a horrible process. Ben literally takes his life in his hands by pushing the limits.

He goes on:

Some might ask 'How? How do you do it?' Medicinal Cannabis Oil! The change over the last few months has been nothing short of a remarkable. Less pain, fewer days of intense pain, more movement, better ability to exercise, fewer prescription medications (most of which have significant side-effects) and best of all a better quality of Life!

But.... the treatment which has been Ben's Lifesaver remains illegal. This mystifies me! How can something that can be so beneficial not be a treatment that can be accessed by those who need it?

Can YOU do anything to change that? Yes you can …

Michael, Ben's dad, is running a petition to the New South Wales parliament on his website.

This is the reason, I am sure, many of my colleagues in this place can see why Ben's mum and dad, and Ben himself, have become such advocates for the importance of legislation such as that before us today. It is an astonishing thing to see the difference between the young man who came to see me in May last year and the young man who did a press conference on the lawns just outside this chamber and who was able to leave that press conference on his own two feet with myself and the member for Throsby. So the legislation before us is something that I am very pleased to support.

In the few minutes left to me, I want to put on the record the nature of the legislation before us. It is, of course, legislation intended to regulate the cultivation and production of medicinal cannabis. This particular bill will amend the Narcotic Drugs Act to permit the licensing of growers of medicinal cannabis in Australia. It will provide new definitions for the issuing of licences for cannabis cultivation and production. It will provide a fit-and-proper person test to be applied to licensees by the Department of Health, and it will override states and territories where there are direct inconsistencies with the licensing provisions in the bill.

There is certainly bipartisan support between the major parties and, I think, unanimous support across all parties for the successful passage of this bill to achieve those purposes. It is true that some may find it a bit confronting and controversial. Indeed, even on Facebook and the Illawarra Mercury website, where they covered Ben's story, some people—understandably—still express some confusion, concern and reservation. It is well and truly time that we took steps towards making medicinal cannabis a reality. It does need to be appropriately regulated to ensure consistency of quality, dosage and so forth for people using it.

The Australian Labor Party is very pleased to support progress on that matter. We know there is quite a lot of evidence—not only the anecdotal, direct personal experiences, such as I have shared with the House today, but also research available on the benefits and potential benefits of medicinal cannabis. It is true that more work needs to be done in that space. We are concerned—all of us—for families accessing medical cannabis products via what is, in effect, a black market. There are direct legal problems for them—the risk of arrest and conviction—the quality and reliability issues that I have just mentioned and the need to have an independent authority that provides some assurances to them about what they are using.

The bill before us is absolutely a step in the right direction. It is also worth acknowledging that the governments of both New South Wales and Victoria are pushing ahead with state based schemes, so the Commonwealth actions will complement that. The Victorian government has committed to legalising access to locally manufactured medicinal cannabis products, for use in exceptional circumstances, from 2017. Michael Oakley is petitioning the New South Wales government. I know he has met with my state Labor colleague Ryan Parke, the member for Keira, who is also fully behind their campaign. The New South Wales government is vigorously pursuing medical trials of cannabis, and they have provided law enforcement by de-penalising offences related to possession and use for particular classes of people. This is an important addition to that work being done by state governments and families, like the Oakleys. It is important that the Commonwealth does its part in delivering these outcomes. I am very pleased to support the bill before us.

I will finish up by acknowledging the great bravery it has taken for the Oakleys to speak out. When we met with them, at the end of last year, they were not certain whether they were going to do this. It is a risky thing, in some ways, for people to speak out and talk about their own experiences. I really admire them for what they have done. I want to thank members of this chamber, on both sides, who have reported to us the experiences of constituents with diseases, such as cancer, who use medicinal cannabis. I pay respect to those constituents' bravery in outlining their stories for us as policymakers to make good decisions. I cannot think of anything more profoundly important to us than the welfare of young people, like Ben Oakley and the many others who are seeking to assist with this bill. I certainly commend the bill to the House.

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