Speaking to the media with Ben Oakley

STEPHEN JONES, SHADOW ASSISTANT MINISTER FOR HEALTH: I’m delighted to be here today with my parliamentary colleague, Sharon Bird, and Ben Oakley and his father Michael. We are here today because finally the Government has introduced legislation which puts us on the path to legalising cannabis for medicinal purposes.

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I wanted to bring Ben out here to talk to you today, because Ben’s own story is a very powerful narrative about why we need to move to ensure that medicinal cannabis products are available for people like him. People who are suffering from rare and life threatening illnesses.

When the Bill was introduced in the House today we welcomed it. It’s not perfect; it’s not the Bill that Labor would have introduced. But it does set us on the path that we need to be heading down to make sure that we open up the benefits of medicinal cannabis to the thousands of Australians who are suffering from pain that they can’t get relief from via other medicines. From muscle spasms that can be life threatening as is the case with Ben. People with kids who have drug-resistant epilepsy who can’t find relief from other traditional therapies. We know that those people are putting themselves at threat of criminal sanctions every day they go out to source the products that are making a difference to their health and wellbeing.

So we will be supporting the legislation, there may be some amendments that we need to put in place. But we support the initiative of making licences available for the cultivation and manufacture of cannabis-based products.

It doesn’t deal with the critical issue that people like Ben face, where they can still be facing arrest if they are caught with illicit products. So we need to deal with this.  The legislation that the Government has introduced today deals with licencing for manufacture. It does not yet deal with the decriminalisation of possession of medicinal cannabis products and that is something that we need Commonwealth leadership on. I’d like to invite Ben to say a few words, to tell you a bit about the condition that he is living with and how medicinal cannabis makes a difference for him.

BEN OAKLEY: Hi, my name is Ben, I’m 20 years old and I have a very rare condition called Stiff Person Syndrome. It is a one in a million condition that has really put a bit of a pause on my life. I was triathlon-fit, I was doing well in school, I had just got my licence and all of a sudden one day I just got dropped basically. I just had the bucket kicked out from under me. It hasn’t been easy to say the least. Since being on medicinal cannabis oil I’ve been able to get some of my life back. It’s given me the opportunity to get back to Uni and have my licence and just get out there and enjoy life. I can’t tell you how much medically cannabis oil has helped me. With my condition I have very severe spasms that are life threatening. It doesn’t matter whether they last a few seconds or hours, they are all life threatening.

But medicinal cannabis oil has reduced my spasms and I’ve been able to get somewhat of a hold on those spasms. To try and stop them from happening. It’s not an easy thing to say the least. When going through a spasm I don’t know whether I’m going to live or not. Since being on the oil, I’ve been able to stay through it and live my life. So we need to get this legalised, help people out there who need it so badly. Unfortunately, we’ve lost so many already because cannabis oil hasn’t been legalised. People that have needed it and have not had the opportunity to because it is an illegal drug. We have to do this; I don’t know what I would be like without being on the oil. It has changed my life. So it has to change and we aren’t going to stop until it’s done.

JOURNALIST: So under this legislation Ben would still be liable for prosecution if he used cannabis?

JONES: The situation we have at the moment is that the Government’s legislation will licence the manufacture and it will licence the growing of medical cannabis. We still don’t have legislation state or federal that deals with the issue of personal possession and use. We need to get all these laws sorted out end to end. We need the Commonwealth working together with the states to ensure that we deal with a whole myriad of problems that people like Ben and his Dad and his family face. They are just trying to look after their son. We need to get all these laws sorted out.

JOURNALIST: [inaudible] because there are people who would think that what has been agreed to here is that people can grow and access the cannabis. So all you are saying is that the cannabis can be grown [inaudible].

JONES: There will be tight requirements and we welcome that. I am not critical of the licencing arrangements that the Government is putting in place. We can’t have a free for all in this situation. We need to make sure that the products being produced are safe and reliable and also that they are affordable and that the dose they are getting is the same every time. Ben can tell stories; his Dad can tell stories of people they know of getting vials of oil that aren’t reliable. We need regulations; we need to look at every step in the chain. Not just the growing, not just the production but also the possession and use of medicinal cannabis.

JOURNALIST: So what is the point of the legislation going this far? Because someone like Ben can’t access the material, because if they do they are committing a crime.

JONES: These are very good questions. We are not critical of the Government for dealing with one part of the puzzle. But we are saying that we need to get every other part of the puzzle put in place as well.

JOURNALIST: So do you want to get every part of the puzzle sorted out in this batch of legislation before it goes to the Senate?

JONES: People like Ben would say, and Michael, and everybody else in a similar situation who are suffering from life threatening illnesses – we want action on this yesterday. We can’t see the reason for delay. We absolutely applaud the fact that legislation is in the House today [inaudible] but we need to get our skates on.

JOURNALIST: [inaudible].

JONES: We are not going to rush into that, we need to carefully look at all the aspects of the legislation. But what we do know is this – no one tier of government can act on its own. We can’t have New South Wales or Victoria or any of the other states thinking that they can act on their own and put in place a scheme that will work because it won’t. We need the Commonwealth and the states and territories working together, because they have all got a piece of the pie. There are Commonwealth and state and territory laws which overlap with each other. We need to get it all sorted if we want a truly national and truly effective scheme.

JOURNALIST: Do you need the Doctors to get on board? Because they can’t prescribe it and –

JONES: Certainly, we need the support of the medical profession. They won’t move until they see the evidence in place, the trials that are going on in Victoria and New South Wales are adding to the weight of evidence. It all adds to the story of people like Ben and his family and thousands of other families who are saying today – we know that this is making a difference.

JOURNALIST: Is it possible to make amendments that would cover licencing and using in this particular legislation?

JONES: The point I want to make is this – you can’t have the Commonwealth acting out of sync with the states and territories. We all need to work together on this. The Commonwealth has constitutional responsibility for medicines. We need to move to put things in place to make sure that we have the right legislation in place there but we also need to work with states and show leadership in the area of criminal laws. If we do it alone without working with the states it won’t work. No one jurisdiction can move on their own. We all need to work together on this and the Commonwealth needs to be the tier showing leadership and date it hasn’t.

JOURNALIST: Can you tell us how often you use the cannabis oil?

BEN: Twice a day. I’ve been using the oil for almost 20 months now and there has been a huge change. I’ve been able to walk with the walking stick 900 metres. Given I couldn’t walk at all, I pretty much had to learn how to walk again. The fact that I can move so effectively is amazing. I couldn’t put my shoes on, I can now do that. I couldn’t shower, I couldn’t roll myself in the bed. I can now do all of those things and more. Things that everyone takes for granted but that I can now do. We’ve still got a long way to go but thanks to cannabis oil, it’s changed my life and with the movements that we have been made lately getting in the media and talking to as many people as possible including politicians – we are getting there. It doesn’t matter what we have to do, it will be done. Because it’s life changing.

JOURNALIST: [Inaudible].

BEN: It hasn’t been as difficult as someone might think. We actually got a message on Facebook from someone who wanted to supply it who thought that it might change my life and it has. They are an angel. They’ve been able to supply the oil free of charge and they don’t have to do that. We said to them – no we can’t allow you to do that. We are more than happy to give you money, but they refused it. That goes to show just show special this person is. Because she has changed my life.

JONES: We don’t want to see her go to gaol.

BEN: No, because I have a life to live. There are things I can’t do at the moment and there is a really good chance that it will happen. At one stage I didn’t think it would, we thought that we were going to have to bury me. That’s not easy. To go from where I was, it was hard. We’ve come a long way; there is still a long way to go. We are improving and thanks to the amount of support, it’s changing my life. It has to be done.

JOURNALIST: Given the different attitudes to marijuana in our region in particular [inaudible] will that create a problem, given that possession of marijuana can get you shot in Indonesia. Do you think that puts pressure on the Australian Government to make them stop dragging their feet?

JONES: The number one concern that we have, that Bill Shorten’s Labor team have, is making sure that we have a medicinal grade product available to Australians. We can deal with all those other international issues once we get our own backyard sorted out. 

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