Life-changing medication out of reach

Tuesday September 20, 2022

Published by: The SE Voice

By: Brandi Miller

Determined mother fights for medical marijuana access

Mount Gambier mother Kat Cooper is advocating for affordable access to medicinal marjiuana (CBD) after witnessing firsthand the effects it has had on her daughter Ella Gray, who has epilepsy.

CBD provided Ella with a 30% reduction in her seizures which improved her concentration, ability to retain more information and overall day to day functioning.

Ms Cooper was spending $196 every 12 days for a 1ml dosage of CBD to treat her daughter's epileptic seizures, despite Ella requiring 4 mls, but can no longer afford the treatment.

Ella was selected for a trial in 2019 due to getting a referral interstate to Melbourne.

Ms Cooper said unfortunately when it came to epilepsy services and access to trials Melbourne was the "place to be".

"South Australia is doing the best with what they have but it came to a point where I needed to explore more options," she said.

"Not only did I receive a second epilepsy diagnosis for Ella, but it was through the dealings with the Professor in Melbourne that she put us on to the trial and thankfully Ella qualified." Ms Cooper is the founder of Ella's Purple Promise, an organisation advocating for epilepsy awareness and affordable access for CBD in South Australia.

Ms Cooper said she created Ella's Purple Promise in 2015 for a number of different reasons.

"The first main reason was to create awareness because epilepsy is a condition that is incredibly stigmatised," she said.

"The second reason was I quickly learnt that South Australia was the only state whose support centre received no government funding.

"The Epilepsy Centre provide vital life changing services including creating seizure management plans, seizure first aid training, seizure mats and emotional support for individuals and families.

"I also wanted to create a platform to empower Ella as she grows up to embrace who she is." Ms Cooper was recently a guest speaker at The Epilepsy Centre's Bosses Day Out, an annual event raising awareness of epilepsy and much needed funds for the Epilepsy Centre.

The highly esteemed occasion was attended by South Australian Premier Peter Malinauskas, Federal Health Minister Mark Butler, State Health and Wellbeing Minister Chris Picton, sporting stars and businesses.

Ms Cooper said she was incredibly honoured and grateful to have been asked to be the guest speaker.

"Epilepsy awareness is something I am passionate about and being able to stand in front of 500 people and share a raw insight into our life with epilepsy was something I am really proud of," she said.

"I had the opportunity to speak with our current Premier Peter Malinauskas and the Federal Health Minister Mark Butler at the Bosses Day Out.

"Both were incredibly giving with their time and not only had a conversation with me but then followed up by contacting Troy Bell and his team who have been advocating for this issue for the past four years also." Member for Mount Gambier Troy Bell said when a parent cannot access a life-changing medication for their sick child, it was clear "there's something very wrong with the system".

"Kat and Ella have been two of the biggest advocates for medicinal cannabis both locally and statewide and I think hearing their story would change anyone's mind on it," he said.

"Four years ago, the former Premier of South Australia promised there would be a pilot trial of medicinal cannabis for juvenile epilepsy but four years later, parents are still shelling out hundreds of dollars a month on medication because of red tape around subsidies.

"In October, I'm introducing a motion to State Parliament which aims to streamline the legislative processes around patient access to medicinal cannabis but also, advocate for more research and trials in South Australia so we have the evidence to support treatment where possible.

"It's a travesty that Kat had to take her daughter across the border to Victoria to access a medicinal cannabis trial - South Australia needs to catch up and fast.

"The more we understand about medicinal cannabis as a treatment for certain conditions, the more South Australians can benefit." Ms Cooper said her hope was that medicinal cannabis can be prescribed for children who have complex epilepsy.

"I am not saying every child with epilepsy needs CBD because there are current anti-epileptic medications that do work effectively in treating seizures but for children who have exhausted those options and who, like Ella, will not be seizure free, the quality of life that CBD provides is a game changer," she said.

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