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Legal and Constitutional Affairs Legislation Committee

CROSSING, Ms Sally, Convener, Cancer Voices Australia

HASLAM, Mrs Lucy Anne, Private capacity

CHAIR: I welcome Cancer Voices Australia, represented by Ms Sally Crossing, and Ms Lucy Haslam, who has had some things to say about this in recent times. Thank you very much for your time today and for coming along. Clearly, this is a very important inquiry and we appreciate the assistance you will be able to give the committee. These are parliamentary proceedings, so parliamentary privilege applies. If there is anything you would prefer to say in private please let us know about that. It is not for me to issue warnings, but I guess you are all well aware of anything you might say that might indicate some contravention of existing laws. They are matters for you and I am sure you understand those things without me elaborating on those. If anyone does want to say anything in camera, please let us know.

You have both provided us with written submissions. Thank you very much for those. We have numbered them 10 and 68 respectively. If you want to make any amendments or alterations to those submissions you can do that now. I will then ask each of you to make a brief opening address and we will ask you some questions.

Senator O'SULLIVAN: If there is something of that nature that would be on your minds, that evidence otherwise might open up the suggestion that there has been illegality—we asked this question in relation to one of the other peak associations about how they find themselves in sticky spaces. I would really encourage you to ask chair to go to in camera. I would really like the chance to find out what is happening down there at street level and how your organisations are dealing with that. Does that make sense? If you are finding yourselves having to—

CHAIR: Thank you for that, Senator. I think both witnesses are reasonably well aware of the issues that we are talking about and they will come to their own conclusions. Thank you, that reinforces the comment. I would say it no stronger than that. Who will start?

Mrs Haslam : Good morning, senators and Chair. Thank you for the opportunity to speak to you. This has become an emotional issue for me and I hope I can adequately convey the need for change in Australia. I am not motivated by anything but a strong desire to use my son's very valid experience and my new-found knowledge of medicinal cannabis for the benefit of sick Australians. There are a few main points I wish to make.

The fact that medicines are approved for use by the TGA does not make them safe. Dan, my son, was prescribed and became heavily addicted to opiates and benzodiazepines during his cancer treatment. These drugs were prescribed very liberally and without adequate consultation regarding the harms. Ironically, this type of medical practice is considered acceptable. By contrast, the side effects of cannabis were far more manageable and the benefits were enormous, yet we were criminalised for using this safer and more effective medicine.

The double standards reflected by Australian laws make it a mockery. I hope that the Australian government can approach this issue without the nonsensical bias of years gone by. Historical negativity by the government and by the medical profession has been adversely impacting patients who deserve to be supported. The result has been widespread civil disobedience by good people.

Particularly in the last 12 months, this negativity has begun to turn, due largely to public pressure creating the need for both parties to re-examine the science and look to progress from other parts of the world. It would be very timely for medical and scientific fraternities to come together in a spirit of education in order to assist each other to learn more about medicinal cannabis. It has been my experience that negative views that are born out of conservative upbringings are almost certainly changed when education becomes part of the equation. For my part, the need for education was a result of seeing Daniel's horrendous suffering. Let me assure you that this suffering is being repeated behind closed doors in thousands of Australian households.

Today, I would like to request that this committee consider facilitating a medical cannabis forum where members of the medical and scientific professions, including those who know very little on the subject, come together to promote a better understanding of the benefits of Australia introducing a medicinal cannabis program. I have prepared some briefing notes, along with suggested attendees and suggested topics for discussion. I have done this in consultation with members of the medical fraternity who likewise feel that this type of forum would be of enormous benefit in this current climate of change.

To finish, I would like to quote Professor Lester Grinspoon, from Harvard University. My experience with my son very closely parallels Professor Grinspoon's own experience with his sick son, also called Daniel, some decades ago. His knowledge on the subject is substantial, and he has said:

Cannabis will one day be seen as a wonder drug, as was penicillin in the 1940s. Like penicillin, herbal marijuana is remarkably nontoxic, has a wide range of therapeutic applications and would be quite inexpensive if it were legal …

It is time to change opinions and reap the benefits of medicinal cannabis. We can make these benefits available to those who need it most without detrimentally affecting the wider community, if the political will to do so is present. Thank you.

CHAIR: Thanks very much, Mrs Haslam. I might just say before passing to Ms Crossing, on your comment about conservative political views of this, that in Queensland, a conservative state, the LNP at their last state council passed two resolutions generally supporting medical cannabis. So certainly even conservative states and conservative thoughts are doing what you are suggesting they might be doing. I know that the other parties have public views on this as well. But even in Queensland—that being Senator O'Sullivan's and my state and seen as a very conservative state—the attitudes are changing. One of the reasons might be that one of our colleagues has a situation not dissimilar to yours.

Mrs Haslam : Thank you.

Ms Crossing : Cancer Voices Australia also thanks the committee for its interest in hearing the cancer consumer voice and inviting us to this hearing. Introducing ourselves: Cancer Voices Australia are the independent, 100 per cent volunteer voice of people affected by cancer, working to improve the cancer experience for Australians, their families and friends. To achieve this, we work with decision makers, ensuring that the patient perspective is heard. Cancer Voices has led the cancer consumer movement in Australia since 2000, and it facilitates the 30-group-strong Australian Cancer Consumer Network, which advocates on national issues identified as important by people affected by cancer—and cancer of all kinds.

Cancer Voices has long supported legislative change to enable access to medical cannabis for those who will benefit from its use and under sensible safeguards. This especially applies, in our view, to people with cancer, as there is good evidence to support efficacy in assisting the reduction of nausea, vomiting and pain associated with cancer and its treatment. We recommend that medical cannabis should be available to supplement other currently offered drugs—and this is the very important bit—according to patient choice with appropriate medical advice. We are aware that Australia is in a catch-up phase with regard to serious consideration about how best to make access possible, and we commend all efforts towards this.

Our New South Wales arm, Cancer Voices New South Wales, has welcomed the recent initiatives adopted by the New South Wales government. This includes making $9 million available for clinical trials of medical cannabis, which all require informed consumer input. We are concerned, however, that they are not examining the use of the natural botanical plant, which appears to be the most effective form.

The New South Wales government has also developed the Terminal Illness Cannabis Scheme, TICS, so that adults with a terminal illness who choose to use cannabis for symptom relief appropriately will not be charged by New South Wales police—a valuable interim step, although of course it does not cover everybody who would be using it.

In our submission, we had expressed concern that the bill could be adding complexity to the process of listing and approving medical drugs by the Therapeutic Goods Administration. Having become better informed since then, we fully support the need for a regulating body as proposed by the bill, noting that it covers a much wider field and does not impinge on the TGA presses. We are also more aware of the pressing need to regulate the production and supply of cannabis for medical purposes. We understand that this has been achieved successfully in several other jurisdictions, not Australian ones of course.

We can only speak in general terms about the very obvious benefits which cancer and other patients would gain from being able to access this valuable drug in a safe and, hopefully, inexpensive way. Mrs Lucy Haslam can give you and has begun to give you a great deal more information based on firsthand experience and her extensive research. We are worried that a lot of debate to date has not been sufficiently well grounded on good information, evidence and observation, let alone the experiences of people who have used medical cannabis to their great benefit and with few side-effects. It is a pity we do not have more drugs with these characteristics, and yet it is illegal. This situation obviously needs to be fixed.

Finally, we commend the inclusion of a consumer on the proposed board of the regulator, if that is what 'advocacy for patients and other users of medical services' means. We would like to see this clarified in the bill, as it is vital that the end users, we health consumers, are properly represented at decision-making levels within such a regulator. Cancer Voices hopes that the eventual outcome of this inquiry will bring Australia up to speed regarding safe access to medical cannabis, another treatment option which is very much needed by cancer patients. Thank you.

Senator URQUHART: Thanks very much for your submission and your appearance today. Given the experience that you have had with your son, how do you think this bill would impact on patients' ability, or in your case parents' ability, to access the products?

Mrs Haslam : I think the bill is to be commended from many aspects, not least of which is that it will address the supply issue, which for people currently is one of the major issues. I had no experience at all with cannabis in any way, shape or form prior to Daniel using it.

Senator URQUHART: How difficult was that process for you? How did you go about it?

Mrs Haslam : It was very difficult. When he first tried it, it was a gift from a fellow cancer sufferer who had experienced the same kinds of problems with chemotherapy treatment.

Senator DI NATALE: Would you mind just going back a step because the story is quite powerful. Could you tell us when he started, at what point in treatment and what was the genesis of that?

Mrs Haslam : Daniel was diagnosed with stage 4 bowel cancer when he was 20. He had three years of treatment, which involved a lot of major surgeries but also a lot of chemotherapy. He was three years into chemotherapy and he was told basically that for as long as he lived he would require chemotherapy.

But for him chemotherapy was not just something that you slotted into your routine; it was a major issue for our whole family because he became so violently ill from the chemotherapy. Daniel developed what is called anticipatory nausea, which is quite common in young people who are on very strong chemotherapy. Just the thought of chemotherapy would actually make him vomit. So, the day before chemotherapy, he would start being unwell. He would initiate all sorts of stalling tactics on the day of chemotherapy, because he would start vomiting, and he would usually vomit on the way to chemotherapy. He would vomit all through chemotherapy. He would vomit on the way home. And usually, invariably by midnight that night, after hours of vomiting, it would be an emergency trip to Accident and Emergency to have some fluids and to have more IV antiemetics. He tried literally every antiemetic that was available pharmaceutically, even the ones that were classed as the Holy Grail, like Aloxi and Emend, which were better than the rest—

Senator DI NATALE: These are drugs that stop you vomiting.

Mrs Haslam : They stop you vomiting. They worked to a degree, but this became such a psychological issue as well—a bit like Pavlov's dog, I guess. We tried to seek help for this in all number of ways, and nobody really was equipped to help us deal with it. At the point where Daniel tried cannabis, he was three years into this treatment. The chemotherapy was not working. They were saying he needed to go back to the original chemotherapies that they had tried, which did not last very long with him because the side effects were so severe.

Senator URQUHART: So his obtaining the cannabis was—what—an accidental meeting with someone when he was seeking treatment?

Mrs Haslam : No. Daniel was a very fit young man. Through the earlier parts of his disease, he would exercise quite heavily. He would go to the gym whenever he could. He would try and stay strong to get through the chemotherapy and the treatment. A local Tamworth businessman who owns a very big gym there had become a friend of Daniel's because he had been through bowel cancer two years prior, and he eventually said to Daniel: 'Look, Dan, this is no way to live. I've got some leftover cannabis that my partner got for me when I was having chemo. I want you to try it.' Daniel said: 'No, I can't do that. Mum and Dad would be against that. Dad's spent his life locking people up for illicit drug use. I can't do it.' That friend then rang me and said, 'Look, Lucy, don't think I'm a drug pusher or anything, but I think Dan needs to try cannabis,' and I said, 'Yes, please, bring it round.' We were so desperate. It was one of the most soul-destroying things to watch him every fortnight go through this whole process, and it was unrelenting. So we clutched at it with, 'Yes, bring it round.'

The next time Daniel had chemotherapy, my husband was at work, and I remember that Dan sent him a text: 'Dad, come and do your thing.' Dad came round and taught Dan how to roll a joint. He had been undercover in the drug squad for many years of his career.

Senator URQUHART: I was just going to ask you how dad knew, but you have explained that.

Mrs Haslam : Even though he was a nonsmoker, he had that history, so he rolled Dan a joint. Dan had a couple of puffs. He was a nonsmoker, so that was difficult for him, but he had a couple of puffs on a cannabis joint, and it was amazing. I really cannot understate that. It was as near to a miracle as I have ever seen. He would go from being the colour of this cup after chemotherapy—

Senator URQUHART: For Hansard: that is really white.

Mrs Haslam : He would come home with a chemotherapy pump on, so he would be out of the clinic but effectively still hooked up to chemotherapy, and he would be the colour of that cup for days. He had a couple of drags; the colour came back into his face, and he just went: 'Wow! I'm hungry. Mum, can I have something to eat?' We just went: 'What is going on here? This has never happened'—because this kid would lie in a hospital room for days and days not eating. This was just such an incredible change. It was life-changing for all of us. We just looked at each other and thought, 'Well, if this is what it takes, this is what it takes.'

Then obviously we had to go about sourcing it. That was quite challenging. I think now we are all talking about cannabis, but take a step back 18 months: you did not talk about cannabis out loud. I thought, 'How am I going to get this for him?' and started to ask a few customers, ones that I thought might have known. And then all of a sudden everybody was coming out of the woodwork, saying, 'Lucy, I've heard Daniel needs some help; I can help you with that,' or, 'I know somebody who knows somebody who can help you with that.' But that did not sit well with me for a long time.

Eventually, as Dan and I researched cannabis, I started phoning people like Alex Wodak, asking questions, 'Is he going to come to any harm from this?' and reading everything I could. Dan decided after a few months of research that there was enough on the net pointing to the fact that cannabis was actually a good treatment for cancer and that people were having some positive responses, so he said, 'Look, Mum, I want to try cannabis oil.' They were really writing Dan off. They had written him off. He was given 12 months when he was first diagnosed. When your 23-year-old says, 'I want to try it to help me live'—that became my next obsession really.

That was a whole new ball game. To make cannabis oil you needed far more than just to smoke or vaporise, so all of a sudden I was feeling very vulnerable because I was now looking to buy larger quantities, which would have had me locked up very quick smart. But I had no choice, so I did it. It was never really not an option once that was the treatment that he wanted to take, because we are not talking first line; we are talking end of the road. We are talking no other options. We decided to do it. And that is why we went public—because I did not feel it was right that you should be criminalised just for wanting to live.

Senator URQUHART: If this bill had been there and available and there had been legal access to cannabis oil through a regulator and a doctor, could you sum up in one or two words what that would have meant to you then when you were going through all that turmoil of 'this is illegal' and a whole range of other things?

Mrs Haslam : It should be like that. It should be like accessing any other medicine. To us, it was just medicine. It was not for Dan to get high and have a good time; it was just to stop throwing up, and it was just to try and give him some hope that he might beat his cancer. I think having cancer is stressful enough. You do not need anything added. It is like all these other conditions we are hearing about, like parents with epilepsy. That alone is stressful enough. You need to focus on your health. You do not need to focus on: where are you going to get your medicine from the black market; what is it going to be made of; what is going to be in it; how much is it going to cost you? Then you have to cook it up. Then you have to try and work out how much you are supposed to take. You want to share this with your doctor, but you cannot even mention it to your doctor because everything about it is wrong. And I think everything about this bill is right. It is absolutely the way we should go.

Senator URQUHART: Thanks, Mrs Haslam.

Senator DI NATALE: Thank you, Lucy. I also just want to pass on my condolences on Dan's recent passing.

Mrs Haslam : Thank you.

Senator DI NATALE: And I just want to congratulate you on your advocacy in this area. It is amazing seeing somebody who can use a tragedy in the way that you have to try and create a lasting legacy, and I just want to pay tribute to you for doing that.

Mrs Haslam : Thank you.

Senator DI NATALE: I wanted people to hear about Dan's story because I think it is a very powerful one, and thank you for the opportunity to be able to hear that. What I would like to know is in terms of the actual bill itself. Do you have any specific feedback that you think would improve the bill or any changes that you think might be necessary? Do you have any general questions or anything like that that might be worth feeding into this?

Mrs Haslam : I guess my only feedback would be: how soon can it happen?

Senator DI NATALE: Timing, yes.

Mrs Haslam : I have this overall sense of urgency for people that have been waiting such a long time for this. Every time a child has a seizure their brain damage is compounded. Every time somebody dies in pain that is a travesty that should not be happening. We can do something about this. This has been tied up for decades now.

Senator DI NATALE: As a campaigner or somebody who recently has come to this issue through your own personal experience, what do you think about the New South Wales announcement to commence clinical trials? Do you have any thoughts on that?

Mrs Haslam : I have a lot of thoughts on that. It is wonderful that the Premier in New South Wales is showing some initiative in the area. I welcome it. Yes, we need research, because for too long people have thrown up the idea of lack of research as a reason to not move forward on medicinal cannabis. The point that I would want to make is do not dismiss the urgent need of people now. We cannot afford to wait for the results of clinical trials, which everybody knows take a long time. Yes, they are valuable. But we should be looking at patients and supporting patients that are using it now. There is still a lot of information to be gleaned from just doing observational studies of current users. Do not throw the baby out with the bathwater. Look after the people that need it now—and do the clinical trials.

Senator DI NATALE: Let me go to your suggestion about a medicinal cannabis forum involving a range of stakeholders. Tell me what you think you need now. Why do you think that is necessary?

Mrs Haslam : I think it is really necessary because there are diverse opinions amongst the medical and scientific fraternity. For a long time that has held things back. Some conservative medical practitioners make some very generalised and sweeping statements that are negative and detrimental. Overwhelmingly, people have dismissed anecdotal evidence as almost being a lie. I have felt that quite personally. I have had it said to me that Daniel's experience is just anecdotal. I lived that experience. I know that it got his head out of a toilet. I do not care if it is anecdotal. If it was a court of law and someone had witnessed something firsthand, that would be the strongest form of evidence. Yet in the medical field the idea of something being anecdotal is almost dismissed. It is over there with the placebo effect.

If someone is getting relief from medical cannabis, they are getting relief from medical cannabis. Does it matter that there aren't umpteen clinical trials that are current and conducted in this country to back it up? If someone with a terminal illness says that their pain is less, they sleep better, they do not have massive mouth ulcers, they do not spend their fortnight throwing up, what are we worried about? The long-term side effects of using medicinal cannabis are completely irrelevant to that person, yet that has been the message of some in the medical fraternity: that we have to be concerned about psychotic episodes that might happen long into the future.

CHAIR: Ten years, they told us yesterday.

Senator DI NATALE: Usually with very high THC strains and low CBDs.

Mrs Haslam : That information was relevant 20 years ago when they were studying medicinal cannabis because of the abuse of medicinal cannabis. Nobody studied it because of the therapeutic use of it. If you talk to a lot of the scientists that were involved in the study into the harm of recreational cannabis, they have had a change of opinion. They have said there might be a propensity for that person to develop schizophrenia, if that was in their genes. That might happen down the track. But we cannot dismiss the therapeutic uses that are there to help people that want to use it as medicine and not to get high.

I just think so much good can come from medicinal cannabis. I have met so many people—I used to say I could write a book, but now I am writing a book!—and I have seen these children firsthand and I have seen the before and afters. I have spoken to cancer patients and I have spoken to people with MS who were ready to commit suicide but are now looking to go back to work. So I do not care whether it is anecdotal. Just to get back to your question, I think it is imperative that we get the negative, uninformed sector and bring them up to speed. But we need to do it in an atmosphere which is not hostile and which encourages education because, basically, that is what it is all about. It is about education. Anybody that is for medicinal cannabis is somebody who has spent the time and done the research. People that are opposed to medicinal cannabis probably are basing their ideas on long held views that are borne out of being conservative and borne out of the denigration of cannabis which has gone on historically.

Senator DI NATALE: On that point, the Australian Capital Territory had their submission yesterday. They have got a specific bill, and Drug Free Australia presented at that hearing. Are you aware of that, and are you aware of how they referred to you?

Mrs Haslam : No, I am not.

Senator DI NATALE: It was reported in the paper. They said that your story was just a medical showcase.

Mrs Haslam : Can I just say that when I held the medicinal cannabis symposium in Tamworth in November last year, which was done purely because I saw there needs to be education and it was just my way of bringing people to Australia to provide education, Drug Free Australia put out a media release the day before absolutely denigrating the symposium and saying that I had some person there—I cannot even remember the person's name—that I had brought over from America to tout recreational drug use. I have never even heard of the person. They just filled this media release of absolute lies. So I do not think a lot of Drug Free Australia. I think they are alarmist. I think they are dangerous and I think they have got it completely wrong. I have got nothing to gain out of this except seeing people suffer less, and unless Drug Free Australia have a son that has gone through what we went through, they do not get it. They are never going to get it. People with closed minds should have closed mouths, and I am afraid they are in that bucket.

Senator DI NATALE: Thank you. The reason I brought that up is that I wanted to get that on the record and hear your response. That was as good a response as I have ever heard to those people.

Mrs Haslam : Can I just mention another group? There is another group called FamilyVoice Australia. I had a mother contact me from Victoria who was one of the first mothers to treat her child with medicinal cannabis. I think that child is something like 18 months seizure free now, and she was going from having 300 seizures a day. She is 18 months seizure free. This mother called me to say, 'Lucy, are you aware that Daniel's photograph is on a pamphlet that my kids came home from school with today from a group called FamilyVoice Australia saying how he is encouraging people to use cannabis.' Anyway, she sent that to me, and I hit the roof. We rang them straightaway and said, 'What are you talking about? Where are you getting this information?' The take on the publication was that Dan Haslam might have cancer but he just wants to get high, basically. So we spoke to them. I asked them where they got their information from. They basically did no research whatsoever. They had picked his photograph off the internet.

Senator URQUHART: Which I assume they did not get consent to use.

Mrs Haslam : They had no consent for anything. We wrote to them. We asked for a complete retraction, which I am sure we never got. My Daniel did not swear very much, but I can tell you now he swore to that lady on the telephone, and if he had not done it I would have. But that is what these ultraconservative groups are trying to do. They are trying to make us look bad when we are only trying to support people that we have seen are clearly benefitting. I think they are very damaging. I will be having a look at what they have to say about me, but it does not change anything for me; it just makes me mad. It makes me pretty sad, as well.

CHAIR: Ms Crossing, I understand you wanted to say something.

Ms Crossing : I wanted to make the point that, although we are a very large island, we are part of a much larger world where an awful lot of research has been done into the therapeutic benefits of marijuana. Again, Lucy knows more about this than I do, but there is a very large cohort of people in Israel who are on a register—I think it is 20,000 people—who are being monitored for the benefits and any side effects. I will not say any more about it because Lucy does know a lot more about it than I do, but I imagine that the people who put the bill together have looked at overseas experience. Several other jurisdictions have developed various aspects that obviously need to be taken into account, and I think probably have, as far as I can tell. I just wanted to make the point that we are not inventing something here. A lot of the discussion sounds as though no-one has ever thought about these things anywhere else in the world.

CHAIR: Thanks, Ms Crossing. We are actually hearing from a witness tomorrow afternoon via teleconference from Israel, so we will learn a bit more about that. To give credit where credit is due, this bill was the initiative of Senator Di Natale, and a number of other senators have sponsored it as well.

Senator SINGH: Mrs Haslam, I also want to pass on my condolences on Dan's passing. Dan was a very courageous young man, and you are courageous, too. Dan's death was a tragedy but his story is an inspiration to so many and, through you and him going public—I have seen you on TV a couple of times—I think the debate in this country has shifted and people's attitudes regarding the use of medicinal cannabis have changed. So I thank you and Dan for that.

A lot of questions have already been answered, but I did want to ask you about the medicines that were prescribed to Dan by doctors to alleviate his symptoms—what the side effects or the effects of those were. At the outset you talked about the fact that medicines are approved does not make them safe; can you talk about some of those medicines that were prescribed and the effects they had on Dan.

Mrs Haslam : Sure. This is probably more in relation to pain rather than to the nausea, although the nausea medications do have side effects as well; some of them are quite unpalatable. Obviously, Dan had a lot of surgery during his cancer treatment. He had several bowel surgeries and a liver resection, which were major surgeries, and he was prescribed opioids. He suffered very severe withdrawals from opioids, particularly when we brought him home after his liver surgery. We were given no guidance on how to manage that. He came back home after six weeks in a Sydney hospital still with drains in situ and on very heavy medication which would make him tired, confused, constipated—it was very uncomfortable kind of medication. Dan tried to get off it as soon as he could.

He went through the rigours of withdrawals, which are very similar to heroin withdrawals. You would know the saying 'going cold turkey', where you are literally freezing, suicidal, covered in goosebumps and in pain. In movies you sometimes see the heroin addict lying on the floor writhing in pain with withdrawals. That was what that was like. Dan went into hospital only last year for pain management and was prescribed a lot of benzodiazepine. He was given three drugs from the same family all at once—short-acting, long-acting and intermediate-acting. We ended up going to a drug withdrawal specialist to try to get him off those, and he could not understand why he had been prescribed that cocktail.

The point I am trying to make is that we have this idea in our heads in Australia that if something is prescribed by a doctor and it has been approved by the TGA, it is okay. I know this is the situation with children with epilepsy as well. They are prescribed drugs that, in themselves, are very dangerous, have very adverse side-effects. They are given them as a cocktail. There is no in-depth study, no literature on what the drug interactions are. Kids might be on six medications that are all interacting. Dan was on several drugs that were all interacting. Everyone says: 'But that's okay. The doctor prescribed it.' Yet he managed much better when he was using a vaporiser and using cannabis oil for pain. It lessened the need for a lot of these other drugs. I feel like we have it all wrong in this country, where we think that, if something has gone through the TGA and it is prescribed, it is okay, as opposed to this demonised cannabis that is going to send everybody schizophrenic. We just have the most ridiculous double standards. Cannabis, by comparison, is a very benign, very well-tolerated drug when it is used medicinally.

Senator SINGH: Presumably, the people who have contacted you are similarly on these cocktails of drugs, because they are the prescribed drugs out there.

Mrs Haslam : That is right. I think the gentleman talking about AIDS made the point that cannabis is not a first-line drug and it is not a stand-alone drug; it should be something that is brought in when other things are not working or as an adjunct to other pain medication. Cancer pain, particularly when it is in the bone, is nothing to be sneezed at. You need to pull out all the big guys when you have that type of pain. When Dan had cannabis oil, it made the period between taking the other pain medication able to last a bit longer. It helped with a lot of the side-effects, like the really bad constipation that you get from opioids. If you have had lots of bowel surgery, that is a big issue, and when you are immobile it is a big issue. It made his gut feel better, it made his skin better, it made his hair better and it made his mouth ulcers disappear. The benefits were amazing. Yet we were criminals because we used it and he was criminal for using it.

Senator SINGH: You were both part of a campaign over the last year for a number of sufferers and their family members. I lost my godmother to rheumatoid arthritis. She was on a number of cocktails of drugs. If this had been available to her, with the difference it would have made, I wonder whether she would still be with us today. I know there are countless examples like that. A witness who will appear before us tomorrow is going to talk about Israel and the experience there, and you touched on that at the end of your submission, specifically to do with the journalist Helen Kapalos. What can we learn from what Israel have done, particularly in nursing homes?

Mrs Haslam : When we had the medicinal cannabis symposium I invited several guests from around the world. Two of them came from Israel and spoke about what is happening over there. After the symposium, Helen travelled to Israel so I have been privy to a lot of the interviews that she has done, a lot of the transcripts. She had unprecedented access in Israel to people like Raphael Mechoulam. He is literally the grandfather of medicinal cannabis. He was the first scientist to isolate THC many years ago, and he has made cannabis his life's work. He is now in his 80s and does not give very many interviews. Helen had two-plus hours with Raphael Mechoulam. She had unprecedented access to the cannabis farms, the cannabis dispensaries and the laboratories. It is all very tightly controlled by the government. It is a government program, it is very tightly controlled and monitored every step of the way. They have over 20,000 participants who are current medicinal cannabis users. She interviewed those people who were using it for all manner of ailments—people with spinal cord injuries, people with epilepsy, people with Parkinson's disease and children with intractable epilepsy.

It is a very big and very successful program, and their focus is on monitoring and looking after people in the here and now—as well as doing the research, but not at the expense of the people who need it now. She spoke to the paediatric neurologist, who is a friend of one of the more senior paediatric neurologists in Australia. When Helen asked her, 'What would you say to the neurologists in Australia who are loath to prescribe this for their child patients', she said, 'Why on earth wouldn't we? We prescribe them all these harmful drugs that cause them to be blind, to have fatal blood disorders, to become obese—and the side effects go on. She said, 'We do this here and we have great results, and we prescribe it to very conservative families who see it as medicine.' I just think there is a lot to learn from that. It is not rocket science; it is common-sense.

CHAIR: Ms Crossing, did you want to add anything on that?

Ms Crossing : I do not think I could add anything. Lucy has spoken very clearly and precisely.

CHAIR: Could you two think about this: this is a bit unusual and I am not going to ask you for an answer now, but at the end of the hearing I might get one of my staff to take a photograph of us in the hearing—as we often do. If you did not object, I would get you both to turn around and be part of it. I am not going to ask you now whether you approve of that. You can think about it and, if you have any concern or hesitation we will not do it. Senator O'Sullivan.

Senator O'SULLIVAN: May I join my colleagues in condolences for your son. Hopefully one day this will be known as Lucy's legacy to the courage of her son, and that is perhaps how we can brand this journey. I am very interested in this subject, because the ignorant resistance—as we might refer to it—comes from, I think, a view in the community that whilst this medicinal cannabis might well become a very valuable treatment for people such as your son and others, there will be those who lawfully abuse the availability of it. I want to separate two things, and I am really interested—to the extent that you are able—in your husband's sharing with you his personal, real-life experiences in relation to his work in the drug squad. I told you earlier that is my history also.

I do not think there has been any challenge, over a long period of time, to this: that cannabis has effects on people, and I think that the physiological effects tended to extend from people feeling more at peace and more at ease. It had that impact. And then, as to the contingent things that occurred as a result, like rashes, anxiety and vomiting, because they were settled physiologically, some of those things did not happen. That is as opposed to the evidence we are hearing about the cannabinoids, which seem to have a prospect of actually affecting, for example, the substantive, underlying condition. We heard evidence of tumours retreating. So do you accept, from your experience, that they are two separate things? One is about this: that everyday cannabis that you can get off a street corner can have an impact, to settle people, and that has therapeutic benefits for an individual who is suffering from another condition, versus the cannabinoid element in cannabis perhaps being exploited to deal with the underlying condition? In your son's case—and I am no expert, and I will rely on my colleague here who is a medical practitioner to correct me, but it would seem that your son benefited from the properties perhaps of the tetrahydrocannabinol element within cannabis, as opposed to its partners, the cannabinoids.

Mrs Haslam : I think you are right. I think he did benefit from the THC. But he also used to take CBD oil to try and counteract that 'high' feeling, and that is what a lot of medicinal patients will do. They do not particularly want to feel high; they will try and counteract that. And there are certainly ways to do that. I think that, as to cannabis science, we have so much to learn. One of the very interesting people who came to Australia was a lady named Mara Gordon who is a cannabis alchemist from the United States. There is far more to cannabis than THC and CBD; there are hundreds of cannabinoids—different profiles—and all dependent on different plants and strains and what have you. I think that, now, where scientists are being allowed to progress, they are able to tailor things—like with genetically modified food, they are able to grow specific plants for specific conditions. So if someone needs something for nausea, this plant is better; if someone needs something for anxiety, this is better, or for pain, this is better. And I think we will get to the point where, if it is allowed to progress, we can have very—

Senator O'SULLIVAN: I think you have answered my question, but we should not ignore, then, the prospect that, as the R&D progresses, tetrahydrocannabinol—the bogeyman in cannabis—perhaps also could have a very positive contribution?

Mrs Haslam : My word! In pain control, THC has a very big part. Someone mentioned the nursing homes in Israel. In Australia, you have nursing homes full of elderly people who have pain issues, so they are on opioids, so they are constipated, so their appetite is suppressed, and they are depressed. Now picture a nursing home where your patients are given some cannabis; they are hungry; they are happy; they are not constipated. What is better? Why do we see THC as this big nasty bogeyman when it actually gives you a pleasurable feeling, which might be entirely relevant when you are dying of bone cancer?

Senator O'SULLIVAN: Sure, but the thrust of my question was that it would be very easy in this journey for us all to retreat to the argument of the cannabinoids and leave our old mate, old THC, sitting in the corner, because it was a safer place to be.

Mrs Haslam : I think that would be a travesty. That would be very sad if you went down the CBD only—

Senator O'SULLIVAN: But do you agree it is a risk—

Mrs Haslam : No, I do not, because people who want to use cannabis to get high are already doing it.

Senator O'SULLIVAN: But in our journey, to try and create a legal environment and a structure, do you believe that—and perhaps it is just your opinion and my opinion—there is a danger that legislators or commentators in this space might take the path of least resistance: of promoting the value of the extraction and application of the cannabinoids and leaving this bogeyman in the corner?

I am asking you if you think there is a risk.

Mrs Haslam : When you say 'leave it in the corner' do you mean have THC—

Senator O'SULLIVAN: If someone knows you have a condition—whatever that might be: cancer or epilepsy—and they think sitting in the world of cannabis are these wonderful white fairies, the cannabinoids that we can extract—

Mrs Haslam : Yes, but THC is a cannabinoid.

Senator O'SULLIVAN: No, I am with you. Perhaps I have not explained this well.

Senator DI NATALE: Just to be clear, 'cannabinoids' refers to everything, including THC, but you are saying—

Senator O'SULLIVAN: Yes, there are good ones—there are white angels and there are dark angels.

Senator DI NATALE: The other ones, yes. There is cannabidiol, which is the one that is often referred to as having positive therapeutic benefits.

Senator O'SULLIVAN: Sure, but in simple layman street terms, which is where we will go with this eventually. If I have not made my point, I will not labour on it, but I fear that as we make the journey we may go down the safe path leaving the other till another day.

Ms Crossing : We should be braver than that.

Senator O'SULLIVAN: I am not talking about us—I am not talking about legislators. I am talking about as we get into the court of public opinion—

Mrs Haslam : I think it would be very sad if you did that because THC has its place when it is used as medicine. That would be like saying we should not have opioids available because some people abuse it.

Senator O'SULLIVAN: Sure, I accept the argument.

CHAIR: Unfortunately, we are grossly over time. I have not had a go yet. Very briefly—and really this is a follow up from Senator O'Sullivan's question—do you know which element of the cannabis was helpful with (a) the nausea and (b) the pain?

Mrs Haslam : I think in cancer THC is probably the most—and I am not an expert—

CHAIR: But from your research? Have doctors told you that? Or have researchers told you that?

Mrs Haslam : Yes. I believe that in cancer for pain and nausea it is the THC. Dan would take CBD to try to buffer the high that the THC would cause but I think a lot of the therapeutic effects were from the THC.

CHAIR: Someone cooked the things Dan was using themselves, didn't they? Someone got an oil out of the leaf; is that right?

Mrs Haslam : Yes.

CHAIR: Was whoever did that able to know what the composition was?

Mrs Haslam : Absolutely not because it was Dan cooking it in his back shed from the stuff I had bought off the street. As time went by people came out and said, 'We can help you with that.' But still at the end of the day—and this is the stupid thing in Australia—you have no idea what you are putting in your mouth.

CHAIR: Someone was telling us yesterday in evidence that most of the grown cannabis in Australia these days has been genetically modified to be principally THC.

Mrs Haslam : Yes. I think you will find that compassionate suppliers have a real problem at the moment accessing high-CBD plants because so many of the plants have been bred to have the high THC, which might be fine for some things but for epilepsy tinctures they want high CBD and there is a shortage of high CBD.

CHAIR: So in all of your cases and treatment with Dan it was all just potluck.

Mrs Haslam : It was potluck. I want to just highlight the problem of not knowing what you are taking. I know this mother has been referred to a couple of times before. I got to know quite well the mother in Victoria who was raided by police and marched down to the police station while 38 weeks pregnant to be photographed and fingerprinted. She then went into pre-eclampsia and was hospitalised. It was terrible. She rang me last year and said: 'Lucy, I need to get my tincture tested because I have had a new batch come and it looks different and smells different. I rang the supplier and they said it was the same.' She gave it to the child and within hours the child was fitting and being resuscitated. She said: 'I need to get this tested. Can you help me get some media involved because, to get it tested, is going to cost me a couple of hundred dollars at a laboratory in Victoria and I cannot afford it and I have several tinctures I want to get tested.' I rang the scientists at Sydney Uni, who I think you met today, and I said, 'Guys, is there any way you could test this?' They said, 'Absolutely, we want to be able to do that but we can't at the moment. We’ve got a meeting coming up and we will find out if we can test it without breaking the law.' The answer came back after a few weeks: 'Actually, no, we can't test it; we're not going to be allowed to test it.' What a crazy situation! This mother wants to know that she is giving her child medicine that is not going to end up with him being resuscitated, and we are not helping that happen. It is madness.

Senator O'SULLIVAN: My question goes to the heart of what I was trying to get to earlier. Do you think that whatever the property was—call it THC for the moment—dealt with the anxiety and therefore vomiting did not occur? Or do you think it has gone into the system and settled the stomach or done something else?

Mrs Haslam : No. I think the use of cannabis for the treatment of chemotherapy induced nausea and vomiting is one of the things that you can say has been well and truly proven in clinical trials.

Senator O'SULLIVAN: Via the anxiety route or this direct route?

Mrs Haslam : I think the jury is—

Senator DI NATALE: There are vomiting centres in the brain and there are natural endocannabinoids that stop it in some people. But having one inhaled externally or ingested can turn off that vomiting centre in the brain.

Mrs Haslam : We all have an endocannabinoid system.

Senator DI NATALE: That is why they work.

Mrs Haslam : Yes, that is why they work. That particular example you have given has been widely proven. We should not have to reinvent that. Dan used to say that there should be a vaporiser next to every chemotherapy chair, and I agree with that.

CHAIR: Thank you both very much for your evidence. Ms Crossing, sorry we did not get to you much today, but I think you appreciate that.

Ms Crossing : I support Lucy.

CHAIR: Thank you for your submissions and thank you for coming along and thank you, particularly, for your courage Mrs Haslam. Again, the committee expressed its condolences.

Mrs Haslam : Thank you.

CHAIR: Congratulations on your courage and that of your husband as well, which must have been particularly difficult for him in his situation. Thank you both for the evidence you have given.

Mrs Haslam : If you do not mind, I will give you my proposal for a consensus meeting. You can do with it what you want.

CHAIR: That would be very, very useful. We will table that as a further submission from you.