I am moving this disallowance not for the Australian Greens but for those many, many patients who have life-threatening illnesses and are undergoing intolerable suffering—patients who have cancers, brain tumours, uncontrolled epilepsy, multiple sclerosis and suffering from debilitating spasms; patients who are undergoing chemotherapy and have intractable nausea and vomiting; patients who are suffering from excruciating chronic pain; and all of those people who need some level of relief for which traditional or conventional medicines are not helping and for which medicinal cannabis has been demonstrated scientifically to provide some significant relief. I am calling on all sides of the chamber to come together now to show these Australians who have been dealt a cruel blow when it comes to their health that this parliament respects them enough to allow them the same rights of access to effective medications as to any other medications.
It is budget week. We have heard a lot from both of the major parties about their level of commitment to health and I just hope that they are not hollow words, that what we will see with this disallowance motion is real support for those people who have terminal illnesses and who require the assistance that only medicinal cannabis can provide to them. It should be a no-brainer. Why? All this disallowance does is restore the existing rights of patients who by definition are suffering from a life-threatening condition to access the medicines they need to ease some of their pain smoothly and rapidly. Should someone be suffering from a terminal illness, there is a special scheme that allows them to get medicines into their hands quickly.
This disallowance motion makes two simple changes to the Therapeutic Goods and Other Legislation Amendment (Narcotic Drugs) Regulation 2016 to restore the rights of terminally ill patients to access medicinal cannabis products through category A of the TGA’s special access scheme and through personal importation. Let me condense that into English. It means that there is a special category A through the TGA that says that, if you have a life-threatening illness, you can actually go to your doctor and your doctor will make sure you get this drug in your hands to help you. It is a special pathway for people with a terminal illness. It also relates to importation. If you have a terminal illness and you get access to medicinal cannabis while you are travelling overseas, you can actually bring it into Australia. Again, we would think that both of those things are no-brainers.
We are talking about people who have life-threatening illnesses, as determined by their doctor. They still need to go to a doctor to get this medication in their hands. This is not some pathway that bypasses the medical profession. Indeed, it is through the medical profession that access is made available. The special access scheme of the TGA is designed to provide a pathway for Australians to access treatments that might not be registered here in Australia. If you desperately need to get access to medicinal cannabis and it may not be registered in your state at this time for the condition that you have, you can get that medication through your doctor. Again, I emphasise that it is through a doctor. It allows doctors the freedom to prescribe the most appropriate treatments to their patients even when that treatment is not available in this country.
There are two tiers of the special access scheme. There is category A and category B, and they have different levels of regulation associated with them, and it depends a bit on the condition of the patient. I want to stress again that the condition of the patient is strictly defined in the special access scheme. If you are eligible under category A, the definition for eligibility is:
… persons who are seriously ill with a condition from which death is reasonably likely to occur within a matter of months, or from which premature death is reasonably likely to occur in the absence of early treatment.
Again, one would think that is a no-brainer.
This government stands up and heralds the progress we have made with medicinal cannabis, but they have been dragged there kicking and screaming, it must be said. But we Greens drafted private members’ legislation and were assured by the government that if we worked with them, they would provide access to patients. We did that in good faith, so I am hopeful that they will now say that this scheme is available to patients. Why is it that we would have a double standard? Why is it that we would have category A, which is basically a standard that says: if you go to a doctor and there is a drug not available here in Australia and you are suffering from a terminal illness and the drug is not registered in Australia, you can have it as long as it is not medicinal cannabis. If we do not support this disallowance, that is what we are saying. We are seeing to patients: ‘You have a terminal illness, but you cannot get access to your drug. We know it is going to help you, and you can bring it here to Australia, but just make sure it is not medicinal cannabis.’ You are either serious about this stuff or you are not. You either recognise that medicinal cannabis is evidence-based treatment for a range of conditions and you make it available to people for those conditions.
For Australians, the special access scheme allows their doctor to prescribe them treatments that they believe will be of benefit to ease their suffering and to do so based on the recognition that time is of the essence. For example, let us talk about some of the stories. Let us talk about Dan Haslam. He was a young man who suffered from a very severe form of cancer. He was 21 years old. He got cancer and underwent chemotherapy. He found he could not tolerate it and spent days afterwards, head down in a bucket, vomiting because of the severe nausea associated with the drugs he was taking. He tried all the conventional drugs that are used to treat nausea. Then someone suggested medicinal cannabis and he got rapid relief with the drug. What should we say to somebody who might be in that position who cannot access the drug? Should they not be able to access medicinal cannabis through the category A scheme? I just simply do not believe anybody would think that was appropriate.
I think sometimes it is too easy here in this chamber to forget that the decisions we make have a material impact on the lives of everyday people. Let me tell you about Lindsay, an 18-year-old boy from Queensland. He has refractory epilepsy, which means it is epilepsy which just does not respond to many of the different drugs that are given. Some of them make people very drowsy and some have a whole range of other side effects. Along with his epilepsy, he has chronic pain and nausea as result of a brain tumour. Lindsay was the first Australian patient approved for medicinal cannabis in Australia, when it was still schedule 9—that is, when it was not available through a regulated TGA process. He also got a serious benefit from his nausea. He actually got some appetite, and we know that many of the people who have cancer lose their appetite and lose weight, and that contributes to the downward spiral. The medicinal cannabis helped his nausea and appetite and he got some strength back.
But the applications for him to get the drug have taken months and months. It was 19 months in the first instance to get access to medicinal cannabis, and the supply is patchy. He has periods of poor health and he simply just cannot get access to the drugs he needs. Lindsay and his courageous mother, Lanai, have been fighting for years not just with the tremendously challenging condition of his health and because of his brain tumour but also with our punitive, opaque and unnecessarily overburdened regulatory system.
We have the coalition who says they want to cut red tape. Well, this is red tape they should be prepared to get the chainsaw out for and rip to shreds. This red tape is stopping a medication that relieves suffering getting into the hands those who need it.
I would say to you that you cannot, and should not, in all good faith vote against this disallowance motion, which would make sure that people like Lindsay are able to access the drug when they need it. Or people like Jason, who was 40 when he died last month from his brain tumour. He was diagnosed in 1986; he went through chemotherapy, surgery and radiation treatment. He suffered severe brain damage and was cared for dutifully by his mother, Janell, until his death. He could not complete his chemo because his weight dropped to 20 kilograms—and he was an adult.
Medicinal cannabis gave him relief so that he got his appetite back and could eat a little. It relieved some of his pain and gave him some quality of life in his final years. But Jason died having to access medicinal cannabis illegally, because the pathways to access it were far too onerous and far too difficult. To use the language of the government, there was far too much red tape. His mother said after his death that her only regret was not allowing him to use medicinal cannabis in her home—because, in her words, she was deadset opposed to illicit drugs. Yet she saw the relief these treatments gave her son and said she would defend his use to anyone.
Access through category A meant that people like Jason—and, indeed, people like Lindsay—could go and see their doctor and, if they were not able to get medicinal cannabis through the pathways approved by this government or by state jurisdictions, there is a mechanism for those people suffering from terminal illness to be able to get the drug in their hands when they need it. I cannot understand how any of my fellow senators here in this place would not be moved by these stories and cannot see that their opposition to this simple change would improve the lives of those dying Australians.
I understand Senator Hinch wants to say a few words, so I will truncate my speech so that he has the opportunity do so. But let me end with the words of one of the advocates of medicinal cannabis, someone called Lanai, an advocate and mother to Lindsay, who asked me to pass on this message to you. She said:
In the life of a patient with a life-threatening illness, like my son Lindsay, one day waiting for a medicine is a day too long. Lindsay has been waiting now since the start of this year and he is suffering seizures again. If this was your child, would you want to wait, or would you think that this government can act now and make sure that patients like Lindsay can get the drug when they need it?
I am calling on all members of this chamber to do the right thing, to stand up for Australian patients and to make sure that today you do something that is good and something that is decent.
Source Chamber Senate on 11/05/2017 Item REGULATIONS AND DETERMINATIONS – Therapeutic Goods and Other Legislation Amendment (Narcotic Drugs) Regulation 2016 – Disallowance Speaker :Di Natale, Sen Richard