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Monday, 21 May 2018
Page: 4011


Dr FREELANDER (Macarthur) (10:53): I'd like to bring the attention of the House today to an issue that is particularly important to me. I've been contacted by a parent of one of my patients—Dean Taylor, who has a daughter who has a particularly intractable form of childhood epilepsy called dravet syndrome. This is a genetic form of epilepsy—the gene defect has been identified—so it's relatively easy these days to identify the patients who are suffering from this condition. These children usually present when they're very young with very difficult to control generalised and focal seizures, sometimes also with absence-type seizures.

The seizures themselves are very difficult to control. They can continue for minutes—sometimes even hours—if they are not treated in an emergency situation. In terms of the long-term control of the seizures, very few anti-epileptic drugs have been shown to make a difference. In fact, some can make seizure control worse. Many of these children are on multiple medications, all of which cause significant side effects. The children, because of the intractable nature of the seizures, develop gradual deterioration in their developmental milestones and require 24-hour a day treatment and frequent hospitalisation. This is an enormous cost in time and lifestyle, as well as costing money to the parents. It has been shown in some of these children, but not all, that medicinal cannabis can have a role in managing children's seizures, improving their lifestyles and, in some cases, even allowing for some improvements in their developmental progress.

Unfortunately for these children, and for other people who may benefit from medicinal cannabis, their treatment has been compromised by the difficulties in prescription and the difficulties in supply of medicinal cannabis. I would like to take a completely bipartisan response to this as we do need to develop mechanisms that make the availability of medicinal cannabis and the prescription of medicinal cannabis much easier for the patients who may benefit. There is, of course, a balance. One of the difficulties we have as medical practitioners is this balance between compassion, wanting to do what we feel is the right thing for our patients, and the evidence, and there certainly have been some claims made about medicinal cannabis that are clearly not true. It is not a cure-all. It's not a drug without side effects, but it is relatively safe and the people we treat with medicinal cannabis are in urgent need of a better way of prescribing it.