Motions: Disability advocacy

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Published Wednesday, July 3, 2019 | Share:

Mr BELL (Mount Gambier) (11:02): I rise to support this motion and talk about an issue facing some people living with a disability. I want to talk about the accessibility and significant cost burden of drugs that may potentially have a major impact on a person's quality of life. I have spoken about Mount Gambier mother Katherine Height previously in this house. Katherine has a nine-year-old daughter, Ella, who was born with a rare and incurable form of epilepsy known as GLUT1 deficiency. Last year, Ella was further diagnosed with Jeavons syndrome, another rare and lifelong form of epilepsy, which puts her among the most severe cases known.

Standard anticonvulsant treatment has stopped working for Ella. Katherine has been tireless in investigating the best treatment options for her daughter. This year, they were offered the opportunity to be part of a special clinical trial at Melbourne's Austin Hospital, which involves treatment with gel containing cannabidiol (CBD). This gel has no THC, which is a psychotropic compound, so it is about as far away from the traditional use of cannabis as you can imagine. In this trial, every single cost is covered for participants, including travel, accommodation, even a cup of tea at the airport.

For the last six months, Ella has had had a synthetic gel applied to her arms and legs twice a day. The trial participants are all monitored closely for any positive or negative side effects. For Ella, the results have been dramatic. There has been a 35 per cent reduction in her seizures, and Katherine says that she has more energy and, most importantly, her quality of life has drastically improved.

With such positive initial results, Katherine wants to continue the treatment and is now concerned about accessing the drug when the trial ends. If the drug stops, she is worried that Ella will regress and her seizures will again increase. The gel is only available to participants of the clinical trial, and Katherine has been investigating how to obtain CBD oil here in South Australia. Without subsidisation, the cost of this oil is around $500 for a tiny vial, and Ella would need approximately one per fortnight.

Some people can apply for a compassionate care program in which the cost is reduced to around $270 a bottle, which is still a huge cost for regular and ongoing medication. Here is a conundrum facing families. Obviously, people living with epilepsy already face a significant cost burden with treatment, therapies, travel and medical costs. The best-case scenario would be that this drug goes on the PBS, but obviously there is much work to be done before that can happen.

With no other options, Katherine said that she will have to consider fundraising, or even try crowdfunding, to fund the medication for her daughter. This is on top of the fundraising she already does to fund services and workshops to help other people with epilepsy in the Limestone Coast because epilepsy is not funded through the state government. It concerns me greatly to think that South Australians are considering crowdfunding to pay for essential medical treatment for their loved ones and that South Australians are having to travel to other states to be part of clinical trials.

Obviously, it is still early days with medical cannabis and there is intense work to be done in research and clinical trials. There is evidence that CBD could also improve the lives of those living with Parkinson's, multiple sclerosis, schizophrenia and other mood disorders, type 2 diabetes and anorexia. A measure of government is how they look after minorities and those who need our help, care and assistance. For me, we need to start looking at ways in which CBD can help South Australians who desperately need it.

Right here in South Australia, I have confidence in excellent facilities such as SAHMRI and companies such as GHD pharma and LeafCann. This year, the LeafCann group announced that they will move ahead with plans to construct a world-class facility in Adelaide after being granted a licence to manufacture medical cannabis by the Australian Office of Drug Control. As with any new drug, accessibility and cost are always major factors.

As a state government, we need to be doing what we can to investigate how we can offer cost-effective solutions to those who desperately need them as treatment options. It is clear that there is significant public support and plenty of demand for medical cannabis. A couple of months ago, the Minister for Health, the Hon. Stephen Wade in the other place, along with the member for Waite, convened at Parliament House a round table of parents whose families are affected by epilepsy. Every family member talked about access to cannabidiol and the impact it has had on their children's life in reducing seizures and improving the quality of their life.

If there was a clear message out of that round table, that forum, it was that $500 per fortnight as a treatment option is prohibitive. There were parents who are mortgaging their house and taking on second jobs just to pay for the vital medication that they see making a real difference to the quality of life of their loved ones.

I have been vocal about the fact that I would like to see the Limestone Coast become a major hub for this industry. I would like to see regional development strategies like this taken into consideration. This is a discussion we need to have for people like Ella and Katherine Height. I know all these issues are firmly on the radar of the minister and, as I said, I commend him for the good work that is being done in this space. Katherine said she was grateful to meet with the Minister for Health, Stephen Wade, and appreciated his listening to their concerns in this area.

The first part of this motion talks about how advancement for South Australians living with a disability could not have been achieved without strong, steadfast advocacy. Katherine Height is the epitome of this statement. Without reward or fanfare, she continues to advocate, fundraise and fight for services and, although she does it for Ella, the benefit is felt by every South Australian living with epilepsy. I thank the house for listening to her story.

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