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Legal and Constitutional Affairs Legislation Committee

FEENEY, Mr Lance, Policy Analyst, National Association of People with HIV Australia, Australian Federation of AIDS Organisations, Positive Life New South Wales and ACON

IRELAND, Ms Carol, Chief Executive Officer, Epilepsy Action Australia

TODD, Ms Lisa, Clinical Governance Manager, Epilepsy Action Australia


CHAIR: Welcome. Thank you all for being with us. As you may have heard earlier, these are parliamentary proceedings so parliamentary privilege applies. If for any reason there is evidence that you would rather give in camera, please let us know about that. We have a submission from the first group, which we have labelled as submission 30, and a submission from Epilepsy Action Australia, which we have labelled as submission 31. Do any of you wish to make any alterations or amendments to your submission? Also, would you like to make a short opening statement? So who is going to start?

Ms Ireland : I am happy to do that. Thank you very much for the opportunity to speak to you today. I will give just a little bit of background. Epilepsy Action Australia is the oldest and the largest of the consumer support organisations in Australia. We provide education and support services for people of all ages living with epilepsy, and also for their families, professionals and the community at large. We have a vision of optimal living for people with epilepsy, and, in order to pursue that vision, we deliver quite innovative, quality services to increase awareness, understanding and knowledge, to optimise those life outcomes.

One of our primary responsibilities and activities is patient education, and in that regard we work quite closely with neurologists and epileptologists in teaching consumers a range of things, including the administration of emergency medications. So it is not unusual for consumers to be asking us for advice about their medications and how to administer them.

Obviously, I am not here today in the capacity of an expert in medicinal cannabis nor in the regulatory process, but I can be here as a representative of consumers living with intractable epilepsy or medication resistant epilepsy. As stated in our submission, around 70 per cent of people with epilepsy will gain reasonable seizure control and 30 per cent will not and will live with the impact of frequent, in some cases daily, seizures. They are the people we can represent. Many of those consumers are expressing concern about accessing medicinal cannabis within the framework of the current Australian legal system and securing medical supervision of the administration of such products. As I said, they will actually come to us and ask us whether we can help in education and in supervising the administration. Our epilepsy nurse educators do in fact play that role with other medications; obviously in this instance we are unable to.

I will not refer to specific families in this forum, however, I can relay numerous concerns and comments gathered from families who are living with children, in particular, with catastrophic forms of epilepsy, such as those mentioned earlier, where the ongoing seizure activity is actually limiting their child's development and quality of life, the impact extending to the family. In some cases further harm is caused to the child through those multiple seizures. Senator O'Sullivan, you were asking earlier about families utilising cannabis. There are many, many that are using it and obtaining it at the moment not through legal means. They are getting it from overseas or they are getting it from local people. Of course, we have the concerns that were expressed by the first witnesses' presentation.

Senator O'SULLIVAN: Are they vulnerable to prosecution on that?

Ms Ireland : They are vulnerable to prosecution, although we have heard of situations, and I can think of particular consumers, where they have been warned and approached rather than apprehended. There are many parents who have expressed the desire to administer herbal derivatives of the cannabis plant supplied on the black market. We obviously share the concern that was expressed earlier about the composition and quality of the product, the lack of medical supervision in regard to potential interactions with their child's current medication and the legal implications with mandatory reporting and anecdotal threats of possible removal of children from their care.

Some parents have been told that their child has a limited time to live, due to the severity and frequency of their seizure activity. After all other treatment options have been exhausted they are willing to risk anything that offers hope or potential to improve the quality of life for their child. I am not exaggerating when I say these children might be having 20, 30, 40, 50 seizures per day, so we are really talking about devastating forms of epilepsy. We understand that this bill is a framework rather than a detailed documentation of the scope and processes of the scheme, and it is for that reason that we will limit further comments to the authorised patient and carers scheme and the importing and exporting licensing scheme sections of the bill. I will pass to my colleague Lisa Todd who is epilepsy nurse consultant and Manager of Clinical Governance within our organisation.

Ms Todd : Thank you for the opportunity to speak today. We at Epilepsy Action have been closely following the developments both in the general community and in the medical research and epilepsy sector of medicinal cannabis over the last few years. It has become evident that families are accessing oils and tinctures of unknown quality and composition in a desperate bid to ease the burden of their child's catastrophic epilepsy and daily seizures. Parents have actually raised concerns about the unknown composition. Consultation with a range of consumer and parent groups elicited a wide range of questions we believe would be addressed by the regulator during the formation of those specific policies and procedures to administer the bill under discussion today. However, concerns which we believe needed to be raised within this framework relate to the everyday activities of consumers and their families and others involved in providing the services to these individuals to enable them to participate within their communities.

The first relates to the protection of individuals from the Narcotic Drugs Act 1967 and the Therapeutic Goods Act 1989. Really, we have questions rather than statements and advice. Would the protection stated in the bill be extended to cover authorised persons carrying the prescribed medical cannabis whilst travelling through or to Australian state and territory jurisdictions not party to the federal bill? This has been of great concern. We often have parents travelling from Queensland to Melbourne for surgery or consultation with specialists. Some of them will fly and they are concerned about transiting through airports and being drug screened and also about being apprehended whilst away from their support networks and having the much-needed medicinal cannabis confiscated, creating potential for increased frequency and severity of their child's activity. These are very real concerns that have been expressed to us.

The second relates to the importing and exporting scheme. Some families have travelled to the United States to seek treatment and administration of specific compositions of medicinal cannabis under the supervision of child neurologists specialising in epilepsy and brain tumours. This particular medication is not currently available in Australia and there is currently no means for families to have it legally imported under the TGA special access scheme. Will the regulator made a provision for individual families to import specific medicinal cannabis not currently available in Australia? Will the family require an importing or exporting licence when travelling internationally? Will the regulator have the authority to negotiate with international jurisdictions to protect Australians travelling to access medical treatment or to see family or holidaying from prosecution for carrying prescribed medicinal cannabis? The response would be very different if you landed in New Zealand than in Thailand. If families will require an importing or exporting licence, is it reasonable to list their names on the publicly available register along with companies? Would this potentially compromise their privacy and safety?

In addition, families have raised concerns about the number of authorised persons required to administer the medicinal cannabis if the child requires it to be administered during school hours, a person is residing in a group home where they have multiple carers and people require it during hospitalisations with medical and nursing staff administering the medicinal cannabis. We are looking at protections for those individuals.

Epilepsy Action Australia supports a national framework for a regulator for medicinal cannabis that: provides a legal framework for consumers and their families living with epilepsy and other designated health conditions to access a sustainable supply of quality controlled medicinal cannabis; takes into consideration the practical aspects of daily activities for authorised patients and carers requiring alternative carers on occasions to administer the medicinal cannabis; welcomes medical oversight of the prescribing, titration and monitoring of the medicinal cannabis; offers affordable access to medicinal cannabis, preferably through the Australian Pharmaceutical Benefits Scheme; removes barriers to accessing unique preparations of medicinal cannabis not currently available in Australia; offers protection from prosecution when travelling to or through jurisdictions not covered by this bill both within and outside of Australia; includes whole of plant extracts in the definition of 'medicinal cannabis'—that has been raised by families because they are very concerned that it is being limited to CBD—gives careful consideration to restrictions on quantities and composition, especially for those unique situations where an alternative combination or its sectional dosage is required for therapeutic results; and provides a national framework for medicinal cannabis research.

CHAIR: Thank you very much for that, Ms Todd. Mr Feeney.

Mr Feeney : I am appearing on behalf of the National Association of People Living with HIV Australia and Positive Life, which is the peak agency representing people with HIV in New South Wales. I am the policy analyst there. I have been working in the HIV community sector for about 15 or 16 years. I was diagnosed with HIV in 1985. In this opening statement I want to cover three main issues: firstly, the use of medical cannabis for the alleviation of painful and distressing symptoms; secondly, the decriminalisation of small quantities of cannabis cultivation and possession for medical use; and, thirdly, the need for research into the use of medicinal cannabis in people living with HIV.

I would like to point out that there is a significant proportion of the estimated 26,800 people with HIV in Australia who live with a burden of disease that goes beyond their infection with HIV. HIV Futures Seven, the national cross-sectional survey of 1,058 HIV positive Australians, reported that people with HIV continue to experience higher rates of multimorbidity, with about a fifth using cannabis for therapeutic and symptom relief. The reported rates of other health conditions where cannabis may be used are: peripheral neuropathy—in the last 12 months, a response to the survey indicated that 25 per cent of them had peripheral neuropathy; nausea and vomiting, 35 per cent; diarrhoea, 62 per cent; sleep disorders, 63 per cent; weight loss, 28 per cent; and low energy and fatigue, 80 per cent.

I will explain peripheral neuropathy a little more in detail. It is nerve damage and it is common in people with HIV. It can be due to HIV or to the drugs that are used to treat HIV. It occurs in 30 to 60 per cent and significantly impairs quality of life, although with the modern HIV medications those cases have actually reduced. But, for those with existing neuropathy, it quite often does not resolve and there is a level of impairment that goes on for life. Most neuropathy in people with HIV starts in the extremities—hands or feet or both. It affects both sides of the body and involves multiple nerves. The symptoms can range from mild tingling and numbness through to excruciating pain. The pain makes it impossible even to wear a pair of socks or to walk any distance. Research has shown that cannabis is effective in helping people with HIV deal with neuropathic pain, loss of appetite, nausea and weight loss. Cannabis is well tolerated and effective when added to analgesic pain relief therapy.

Decriminalisation of cannabis cultivation and possession for medicinal use would allow people with HIV to have more control and choice over strength, purity and availability. A quarter of people with HIV live below the poverty line, and the cost of cannabis can be and is an issue. Many of these individuals are older gay men with multimorbidity who live alone on the disability support pension and struggle to maintain their health and wellbeing, particularly as they age.

Lastly, we are pleased that the bill will allow for formulating rules and monitoring compliance for licensing, production, manufacture and supply of use of medicinal cannabis. We are pleased that the bill includes provisions for research into medicinal use of cannabis. People with HIV experience much higher rates of depression than the general community, with 35 per cent indicating that they are taking medications for depression in the last six months. Additionally, 30 to 50 per cent of people with HIV have some degree of HIV associated neurocognitive disease, with 30 to 50 per cent of these developing some degree of impairment. It will be important that research is conducted into the effects of medicinal cannabis, both positive and negative, so that a better understanding can be gained of potential drug interactions and toxicities and reliable information provided to people with HIV about their cannabis use and the potential harms and benefits.

Finally, I want to thank the Senate committee for allowing me to give evidence. I very much appreciate the opportunity. Thank you.

CHAIR: Thanks very much for that. Mr Feeney, just before I pass to my colleagues, what was that survey that you held up?

Mr Feeney : HIV Futures. It is a cross-sectional survey of HIV positive people around the country. It asks a whole range of questions around their medical conditions and their lifestyle factors, both social and societal, and it gives a good indication of their general health.

CHAIR: That is where you got that figure that 20 per cent are on cannabis?

Mr Feeney : That is correct.

CHAIR: Either from the survey or from your own knowledge, is that just smoking marijuana? It is not using an overseas legal drug that is imported?

Mr Feeney : No. I think currently most people are smoking cannabis to alleviate mainly pain, mostly from peripheral neuropathy, but also to alleviate symptoms from other chronic conditions, such as nausea, vomiting and diarrhoea.

CHAIR: We have heard evidence in the last couple of days that the marijuana plant is genetically modified, and these days, as some of the evidence suggested, it has been modified to have a greater level of THC rather than CBD. As I understand it, it is the CBD that gives more relief; the other stuff gives you a euphoria that may not last. Do people complain or comment to your organisations about the differing and irregular quality of the marijuana they are smoking?

Mr Feeney : They do. It is very hard for them to know the quality and quite often also to source the drug. That is why I think some people choose to grow it themselves. Of course, they then risk prosecution and that can have other impacts.

CHAIR: Does that same issue of uncertain quality arise with people you are aware of, Ms Ireland?

Ms Ireland : It does. We are talking primarily about tinctures and oils, and the property for most children with epilepsy that is useful is the CBD. But parents do raise concerns about knowing the quality and knowing exactly what is in it. As the earlier speaker was saying, it is not even able to be tested.

Ms Todd : Also, there has been one instance that I have heard of, in Western Australia, where a child was on a particular tincture and, when it was tested by the hospital, a lot of contaminants were found within that tincture of pesticides and—

Ms Ireland : The child died, I believe. One child has died as a result of using—

CHAIR: Some witnesses are coming to give evidence later today and tomorrow, and I would not ask them this question but I can ask representative organisations. Do you have a fair idea of where most people get their marijuana from? It is obviously done illegally because, at the moment, it is illegal in Australia.

Ms Ireland : We are aware of some suppliers. One has been quite publicly spoken about, and consumers have certainly rallied around him. So we are aware of some suppliers; we are also aware of families who travel to the United States. I am thinking of one consumer whose son has a brain tumour and uncontrolled epilepsy. When they go to the United States—he is on treatment there—the tumour shrinks and the seizures slow right down. When he comes back if he cannot get hold of the—

CHAIR: Does he try to bring it back with him and risk the trouble of being caught?

Ms Ireland : Some families will do that in absolute desperation. As I said, these are devastating forms of epilepsy, not the majority of people with epilepsy.

CHAIR: Do you have evidence—and I will ask same question of you, Mr Feeney—that there are organised criminal gangs supplying to people, who are hopefully using it for medicinal purposes?

Ms Ireland : No, I am not aware of that.

Ms Todd : On Facebook, there are some closed groups where sourcing marijuana is discussed so that they can make their own tinctures. Again, one parent expressed their fear and disgust at having to go and source it locally rather than being able to do it legally. A lot of parents are expressing that concern. A lot of parents actually are desperate to use it, especially if they have children with these catastrophic epilepsies, but they are not doing it and are just waiting. But the trials that the first speaker spoke about in childhood epilepsy and medicinal marijuana will not start recruiting until 2016. These families need help now. There are going to be a group of families who—

CHAIR: Sorry, what is the significance of 2016?

Ms Todd : That is when they start recruiting for these clinical trials in childhood epilepsy and the use of medicinal cannabis.

Ms Ireland : If I could reflect on the conversation that Senator O'Sullivan had this morning with the first speaker, we agree that it would be terrific if the R&D came first and then the other things followed on. The reality is many families are already obtaining and administering some form of medicinal cannabis. If I can just put a background around that, Lisa mentioned Dravet syndrome, which is one of the more devastating forms of epilepsy. There is anecdotal evidence out there because some parents are willing to speak out now. They are being quite public about the fact that they have obtained the tinctures and the oils and they are utilising them with their children. The anecdotal evidence is showing that it is actually having a rather remarkable effect. So that is the background you have got, where desperate parents are looking at this.

CHAIR: I am just interested in the source, which is putting people into illegal positions they do not want to be in, in most cases. Mr Feeney, did you have a comment on the same subject? If the drug were available for its medicinal purposes, would it prevent people being thrown into perhaps an organised criminal element just to get what they find is a relief?

Mr Feeney : I think it certainly would. Most people have to either buy cannabis on the streets, if they are using it for medicinal purposes, or grow it. In both instances, that places them at risk.

Senator O'SULLIVAN: I would ask colleague Senator Di Natale to keep an eye on my question in case I misinterpreted something earlier. I understood the first witnesses to suggest that there was some examination of products being used and only one of the 17 turned out to have any evidentiary features that had sufficient concentration of the cannabinoids as opposed to higher concentrations of THC. You gave an example, and I do not want to isolate that, and the same with your evidence, although I think that, in your case, it might be understandable that THC might provide an environment of relief from pain and suffering that is well known. But where we have had shrinkages of tumours, how is this possible if 95 per cent of the product does not have these positive cannabinoids?

Ms Ireland : In the particular example I cited, that is actually somebody who is going to the United States and not only using a CBD based tincture but using THC and CBD under the supervision of neurologists.

Senator O'SULLIVAN: Let us set that one aside, because you have got other anecdotal evidence where people are saying there are positive impacts. Are we dealing with positive impacts that might be coming from the tetrahydrocannabinol side of the contribution as opposed to the cannabinols?

Ms Ireland : Yes, and I can only report that—and this is the vast majority of people that are feeding back to us—it is really about epilepsy, not epilepsy in tumour. It is about epilepsy and the more difficult forms, and they certainly believe that they are using CBD based tinctures. I do not know whether any of them have been tested.

Ms Todd : With some of the people that we have been speaking to, especially where they have had such a positive response to the medication, it has been sourced from the same area where they are growing a particular strain which has very low—minimal—amounts of THC and it has lots of CBD in it. That has been tested by one laboratory, which was probably illicit. The other thing is that the New South Wales Police tested it as well when they confiscated it from a family, and there was no grounds because it had such minimal amounts of THC that they could hardly measure it. This is the one source where a lot of the families are getting their tinctures and oils from.

Senator O'SULLIVAN: I understand when you say we need to move very quickly because these families need a result now. I imagine that has come at the end of a very long period of frustration measured probably in years if not decades for some. I cannot help but think that we need to get the science right at the R&D, which is the only pathway that I know. If there is an urgency, it is for us to very quickly make sure there is a pathway for R&D. We should be able to solve that by the time the sun sets today, in effect, as a challenge, before we start to produce and particularly before we start to have clinical trials that involve people. Would you be inclined to agree with that?

Ms Ireland : Yes, we would agree. I suppose what we are trying to point out is the reality of people out there already utilising. I understand—and I might defer to Lisa on this—there is also a risk in suddenly withdrawing that medication from those children. If we were to say stop or force them to stop, there is then a danger on the child as well.

Ms Todd : Of increased frequency and severity of the seizure activity. That is the same with any antiepileptic medication when there is sudden withdrawal.

Senator O'SULLIVAN: As a parent and a grandparent, I am certain that that is going to continue. We need to be conscious to help them not get off into the table drain—to use a main roads term. Ms Ireland, do you know of any actual prosecution of a family? I am not talking about someone who has just popped up with the idea and has been caught with an ounce of marijuana because they get headaches. I am talking about a genuine mum and dad, suburban family. Are you aware of any prosecutions?

Ms Ireland : I am certainly aware of the prosecution of the supplier that Lisa is talking about, and of mums and dads who have been threatened. There is one family in particular in Victoria who went public with it. There are other families as well who have been threatened—and then it has been allowed to drop. It has been interesting.

Ms Todd : That particular mother was taken to the police station and fingerprinted—and then they dropped it.

Senator DI NATALE: Was that in Victoria?

Ms Todd : Yes. There was also the prosecution of a parent in Queensland, but there are other circumstances around that situation, so I think we should leave that one aside.

Senator O'SULLIVAN: You have seen evidence that law enforcement is using some sympathetic discretion here are along the way.

Ms Todd : In New South Wales, particularly, they are using that discretion.

Senator O'SULLIVAN: Mind you, it is not a discretion they are entitled to use.

Ms Todd : There is mandatory reporting required when a drug of abuse is administered to a child. There have been instances where medical staff have had to report to child services.

Senator DI NATALE: Have they been involved?

Ms Todd : Yes.

Senator DI NATALE: In Victoria? Potentially the same case you described?

Ms Todd : And New South Wales as well.

Senator DI NATALE: These are mums who are being interrogated by the Department of Human Services or its equivalent about their fitness to be a parent?

Ms Todd : Yes.

Senator DI NATALE: What are their responses? I imagine you talk to them. How do they feel about being questioned about whether they are doing the right thing by their children?

Ms Ireland : Horrified and very distressed and, I used the word earlier, desperate. For these parents, if you can imagine their child having 20, 30, 40 seizures a day and understanding that there is further damage occurring for that child, that is the desperation.

Senator DI NATALE: And then on top of that someone comes in and questions your capacity to be a good parent.

Ms Todd : There is also the risk that, if that child is removed from the home, the medicinal cannabis is removed and the child has further seizures, they are at an extremely high risk of death from those seizures—status epilepticus. There are a lot of issues around that. That is why parents are also fearful about losing the continuation of the supply. They know that there is often not a lot of consistency in the supply of the tincture that they are getting. They are in this very difficult position where they are breaking the law. Most of them are law-abiding people, but they will do anything for that child to improve the quality of life. Even a 50 per cent or 25 per cent reduction in seizures as a result of having that medication or the tincture will actually improve their quality of life enormously. Some children who have been non-verbal, not able to eat or sit up or crawl or even have a conversation have, once their seizures stop, started developing and gaining skills.

Senator O'SULLIVAN: This is based on anecdotal evidence as opposed to a clinical trial that has specific reference points.

Ms Todd : Orrin Devinsky, who is a renowned child neurologist in America, based in New York, has done 12 weeks of research—because they actually stopped it, because they have actually expanded it. Originally it was 12 weeks of research into children with Dravet syndrome. Fifty-five per cent of the children improved with the medication. Then they had a look at those children who had improvement, and only 10 per cent of them became seizure free.

Senator O'SULLIVAN: This is where you have got at least some foundation evidence that that material has a high concentration of cannabinoids. You are getting a big body of anecdotal evidence here in Australia. It would seem that this stuff is beneficial. You need to hold that up against the prism of the early evidence where we had 17 samples of this and only one worked. I am never going to suggest that we have got some placebo effect here. That would be rude and unfair. But it would seem that either the anecdotal evidence you are hearing has been from a cohort of users who have been lucky enough to get the one in 17, and you are not hearing from the others who may be trialling and it is not working.

Ms Todd : We are hearing from parents who have trialled. They have been very open about saying they have trialled it and it has not been successful for their child, but there are over 40 different types of epilepsy. That is why it was very important that the original study that was done in America last year looked specifically at Dravet. They were comparing like with like. Now that is being expanded to other forms of epilepsy.

Ms Ireland : We fully support the R&D effort. To begin with, what we were hearing about was people who had got their supply from the one person. It was a Queensland supplier. We do know that that had been tested and it was minuscule THC and CBD. The anecdotal evidence is based on families we have assisted where we have actually been able to meet the children who were, as Lisa said, non-verbal and so on and are now participating in their communities. So yes, it is anecdotal and yes, we know the supplier and so on. But if I can just quantify this too: the lifetime prevalence of epilepsy is somewhere around 800,000 people in Australia, and 30 per cent of those people will be unable, with current medications, to gain good seizure control. You are talking about nearly a quarter of a million people. To add some statistics into that: not everybody will be helped by the CBD that we know is currently being prescribed, and hence the R&D.

Senator O'SULLIVAN: Do you guys find ourselves in some sticky space from time to time where people are looking for guidance?

Ms Ireland : Sure.

Senator O'SULLIVAN: I say, Chair: shame on us if we do not sort this out pretty quickly for these people.

CHAIR: Senator Singh.

Senator SINGH: I want to follow on from Senator O'Sullivan's questioning and go to the heart of the matter of why parents are accessing cannabinoids for family members with epilepsy as opposed to the current anticonvulsant medication. This is also for you, Mr Feeney, in relation to treatments for HIV and AIDS. What is the difference with the current anticonvulsant medication and therefore why would parents access this medicinal cannabis?

Ms Ireland : If I come back to the statistics, as I said, 30 per cent of people with epilepsy will not find seizure control from the current medications.

Senator SINGH: That means they will continue to have seizures—

Ms Ireland : They will continue to have seizures.

Senator SINGH: The medication will not work for them.

Ms Ireland : Correct. It is known as intractable epilepsy or medication-resistant epilepsy. Most of these families have tried a whole range of medications over a considerable length of time. It would start with one medication that does not work, then a second medication and then a cocktail of medications, many of them with very, very difficult side-effects to manage. So they have not just gone to seek the CBD, cannabidiol; they have actually been through the process of accessing all kinds of medications prescribed by their specialists, with no positive impact.

Ms Todd : Also, they have been deemed not suitable candidates for surgery or vagal nerve stimulation, which is another option for a very small number of people. With the medications, 70 per cent of people find that they will have their seizures well controlled on the first or second medication that they try, but with every subsequent medication they try that decreases significantly. By the time they reach their fourth medication there is a very slim chance that they will find a medication unless a new, novel medication has been released onto the market. They used to wait until people had tried five to seven medications before they would refer them to see if they were a suitable candidate for surgery; now they are referring people after three or four failed medications.

So these parents have gone through a huge number of medications and combinations. They are not suitable for surgery and they are not suitable candidates for vagal nerve stimulation, so they are desperate. The first parents who started coming out and saying, 'We are trying this, and look at these amazing results,' were the ones who were told that their child was having so many seizures that they would have only a few months to live. That is where it started. Now it is starting to spread to families who are in very similar situations but before they are being told that their child only has a couple of months to live because of the seizure activity.

Senator SINGH: Mr Feeney, did you want to add to that?

Mr Feeney : As I understand it, it is quite difficult for many people with peripheral neuropathy to get effective pain relief. They are already using a range of analgesics, some of them quite strong, and some of them quite expensive. I think the use of cannabis is in addition to those analgesic pain reliefs—narcotic analgesics, in many cases—to blanket the pain and to try and get some sort of symptomatic relief. So it is an additional medication.

Senator DI NATALE: Mr Feeney, in your survey you said that 16½ per cent of people are using it as a therapy, which is separate from recreational use. That is 16½ per cent of what base? What is the total number of people living with HIV?

Mr Feeney : That 16½ per cent was from the HIV Futures study, and there were a little over a thousand people from around the country in that study.

Senator DI NATALE: We can assume that is an accurate cross-section?

Mr Feeney : However, there are about 26,000—nearly 27,000—people with HIV across the country.

Senator DI NATALE: So we assume that is a representative sample?

Mr Feeney : It is a reasonably representative sample. It is a little biased to older people with HIV, but it does cross the spectrum of lived experience.

Senator DI NATALE: If we are talking about 16 per cent of 27,000, we are talking about over 3,000 people living with HIV who are using medicinal cannabis for some sort of therapeutic purpose.

Mr Feeney : I think that is a reasonable assumption.

Senator DI NATALE: I just want to get a sense of the numbers, because we are hearing that hundreds of thousands of people are using this. In your area, do you have a sense of how many people there are? I imagine many people do not want to come forward and volunteer it; in particular, it must be a very sensitive issue with young children. Would you have any sense of the scale of the issue?

Ms Ireland : I could not quantify. We have a consumer base that is quite large. If we look at our Facebook community alone where we interact and deliver services, we are looking at 38,000 to 39,000 people that we interact with. And this has become the most common issue.

Senator DI NATALE: It is the most common issue discussed?

Ms Ireland : Amongst that community online and phoning us and so on. It has become a very common issue.

Senator DI NATALE: Interesting. It must put you in a very difficult position. I do not want you to say anything you feel uncomfortable saying, but you are in a position where you are seeing some kids whose lives have been transformed. I agree it is anecdotal at this stage, and often the best discoveries in medicine start with a series of case studies. It is the way we progress knowledge—we pick up through case studies individually, then we move to the next step of properly structured clinical trials. But it must put you in a difficult position.

Ms Ireland : It does.

Senator DI NATALE: How do you respond?

Ms Ireland : Our response has shifted a little in tone, while not too much in content. We have always said: 'The research is needed. We cannot help you obtain this. We cannot give you advice in any regard.' We have always said that. I think we have said that very firmly for some months. The consumers became angry. Our position now is that we are still saying the same thing, but we are very clearly saying, 'We are trying to advocate on your behalf to see that the proper structures come into place so that you can obtain this legally.' That is the position we take now.

Senator DI NATALE: So that is an option. Say we had a bill that says: 'We recognise there are people who are using this at the moment. We have an opportunity to produce a product of known quantity and quality, and we know exactly what proportion of CBD to THC is in that product. We can do it in a controlled environment where we can actually research it. We might do a trial that looks at comparing different groups and sees that we are using it for the same conditions, comparing like with like.' As you said, there are many variations of epilepsy. How would you feel as an organisation if we had a legislation framework set up that said, 'Now we can allow your consumers access to a drug of known quality and purity under controlled conditions, and we can have all the symptoms documented and build the research base that we need to to decide whether or not this is an effective therapy'?

Ms Ireland : We would be very supportive of that. I can tell you that I have an email inbox full of emails from parents who are not currently accessing it, saying, 'If you know how to get into these trials, please tell me.' So we would be very supportive and we would assist in helping people get into the trials and in education, if it is required.

Ms Todd : The recruitment criteria for these trials at Sydney Children's Hospital, which the first speakers are involved in, have not been developed yet, and it will not be until 2016, and the children of many of these desperate parents will not be eligible to be included in those trials, because there will be a very narrow focus. So there is still a problem.

Senator DI NATALE: That is right. We have heard from the researchers, who are not sure about where they are going to get their product from.

Ms Ireland : It is a real dilemma.

Senator URQUHART: I think you have covered off on most things. Firstly, I would like to make a statement. In Tasmania I have met many, many parents who administer medicinal cannabis to their children. To hear their stories but to also look at the photos of what their child was like when they were on drugs that did not particularly work for their seizures and to see the children now—some are young adults but others are still quite small children—demonstrates that it is absolutely life changing, not only for the child but also for the parents, who can now generally go about their day.

I know that we have anecdotal information. Obviously, we have heard from the researchers. A lot of parents have told me that they get their product from America, where they can just go in and buy it off the pharmacy shelf. They get it sent to them in lots of different ways. But, because of the growing evidence that they see for what it means for their child, they are fearful that they may not be able to get it in the future or to get a regular supply. So they are tending to draw back on how they administer it, which means they are only using it in a limited capacity, which is not seeing the potential of their child for the future. Are you hearing anecdotal evidence of the supply being shortened, which means that people are not using it as they would normally, which means the child does not benefit as much?

Ms Ireland : There are several concerns in there and several parts to the question. But, yes, we do hear of the concern. There are parents who, whether they are getting it locally or overseas, are concerned that somehow that will dry up. There is the issue that Lisa alluded to: if you suddenly withdraw any antiepileptic medication or change the dosage, it is a risk. Not only might they not be seeing the benefits but there is a risk in playing around with that medication, if you like. Some of these families had exactly this happen when the Queensland based supplier was in fact jailed and so, for a period, was not available. The tincture dried up. The kids were terrible. Yes, it is anecdotal, but this is certainly what we see, because we actually know some of these children and families. We know what the child was like prior to that treatment, and it is very hard to argue against.

Senator URQUHART: Yes, there are some really compelling stories out there. I know there is a mum that has a YouTube video showing what her son was like prior to being on this—with absolute gashes and huge cuts on him that he had to be hospitalised for, because he fell and hit his head or whatever while having seizures—compared to now, when he is this normal sort of child who can participate in society. It is a complete reversal of what it was like.

Ms Ireland : That is exactly what we have seen in some instances. I am quite sure that not every child with intractable epilepsy will have exactly the same—

Senator URQUHART: Sure.

Ms Ireland : result, but there are certainly a large number who have, and the R&D hopefully will work out the different combinations of THC and CBD and all the other things mentioned.

Senator URQUHART: Yes, as well as—Mr Feeney's issue—for maybe older people, not particularly with HIV but with other issues, who use it for pain medication as well. Okay. Thanks.

CHAIR: Thanks very much to the three of you for your evidence and the assistance you have given the committee. We very much appreciate it.

Ms Ireland : We appreciate the opportunity.

CHAIR: The committee will now have a break.

Proceedings suspended from 11:16 to 11:34