Epilepsy awareness is something we should strive for everyday but especially on March 26th  – Purple Day! Knowledge is power when it comes to understanding and assisting someone with epilepsy. So, this Purple Day, Epilepsy Action Australia has an important message for the public: Please educate yourselves about epilepsy and learn how to assist someone who is having a seizure. There’s no reason to be afraid if you see someone having a seizure; you can help, with just a little knowledge about the condition.

Knowledge is power

We often hear from our clients about their negative experiences after having a seizure in public. This is not surprising – people who have never seen seizures before can panic because they don’t know what is happening or how to help.

And for people with epilepsy, it’s understandable that they are worried and self-conscious about having a seizure in public. Seizures can be unpredictable and the fear of having one can be so bad that some people even avoid going out. They worry what others might think and, when anxiety takes hold, it can make them feel others are judging them in a negative way.

Epilepsy has its challenges, but people living with the condition don’t want to let epilepsy define them or their loved ones. Let’s be there to support them by spreading some awareness.

Purple Power

This year marks the 10th anniversary of this international day for epilepsy. Purple Day started in 2008 when young Cassidy Megan, motivated by her own struggles with epilepsy, created this idea of a global grassroots effort to raise epilepsy awareness. We just love getting involved and seeing so much purple across Australia! Every year gets bigger and better than the last in raising awareness of the condition and funds to do more.

I know that the meaning of Purple Day is different for different people. But at the same time, we can all share the power of knowledge and in doing so raise more awareness and hopefully reduce fear and stereotypes in the community.

With thanks

I take this opportunity to personally thank all of our supporters who have already started raising much needed awareness and funds. Your dedication to this day is unwavering and we are always excited to see photos and share your stories.

To our Purple Day sponsors and product supporters: Hall & Melia Accountants, NPFulfilment in memory of Tom Arapovic, Brooks, Converse, Crayola, Castle Towers and Westfield Hornsby, we thank you for getting involved and playing your part in epilepsy awareness!

Get Involved

This year we have two competitions running:

We have lots of new merchandise in our online store, which is open 365 days of the year!

  • Get your t-shirts and caps
  • We have Converse shoe packs available (these have been very popular!)
  • Or maybe a new key-ring is more your style

So however you like to celebrate Purple Day: hosting an event, going on a fun run, wearing purple, making a donation, buying some merchandise, or even just talking about the condition, please remember that every little bit counts in spreading the word about epilepsy.

Happy Purple Day to all.
Carol

P.S Funds raised by Epilepsy Action for Purple Day will go towards more education programs for the community. It’s never too late to get involved, so check it out here.

It’s natural as another year comes to a close that we reflect on all that we have achieved throughout 2017. There’s still so much to be done but we’ve had some major wins. I wholeheartedly thank the Epilepsy Action Australia, our partners, stakeholders and clients for all their support, hard work and donations.

Recently, after our Annual General Meeting, we held a special presentation called Hearts, Mind and Heritage: A Journey Together, which was attended by many of our local stakeholders and live-streamed to others across Australia. We were privileged to have as a guest speaker the incredibly eloquent Vivian Greig, whose late husband, legendary cricketer Tony Greig, has inspired much of Epilepsy Action’s work.

Tony’s legacy lives on with MyEpilepsyKey educational tool – now widely recognised by specialists as one of the best patient resources available.

Medicinal Cannabis Remains the ‘Hot Topic’

We were also lucky to hear from medicinal cannabis crusader and philanthropist, Barry Lambert, whose 6-year-old granddaughter has epilepsy.

I share Barry’s belief that it is vital to draw attention to the serious plight of families who have children with intractable (medication resistant) epilepsy, and who remain in a ‘period of limbo’ until medical and law reforms are complete.

Early research suggests medicinal cannabis can reduce the severity and frequency of seizures in certain cases. However, there is much misunderstanding about this issue, particularly the inaccurate belief that medicinal cannabis causes the same psychoactive effects of ‘getting high’ as recreational marijuana.

Through my involvement on numerous government and university-backed councils, my many media interviews and seminar presentations, I am heavily involved in representing your interests, advocating for more research and educating on this new area of hope.

Key Achievements

As we embark on this last year in our five year Strategic Plan it’s been great to look at our many key achievements over the past four years, which have included:

  • The launch of a new Epilepsy Action logo and faster, fresher website
  • Successful collaboration on significant research projects including the Australian Pregnancy Register; PELICAN project (Paediatric Epilepsy Lambert Initiative Cannabinoid ANalysis), and SEISMIC (Sydney Epilepsy Incidence Study to Measure Illness Consequences)
  • Assisting over 30,560 people with epilepsy with support in recent years
  • A record high of 97% client satisfaction with Epilepsy Action services
  • Over 3,600 participants across Australia benefitting our from community based education last year
  • Nearly 3,000 users accessing our Online Academy last year

And that just scratches the surface! You can read more about our continuing projects and the considerable progress we have made towards our core objectives in the 2017 Annual Report. You may also like to view the presentation available here.

Increasing Awareness is the ‘Big One’

New research commissioned by Epilepsy Action has found that awareness of epilepsy is not only shockingly low, but decreasing, with only 28% of people aware of the world’s most common serious brain disorder.

Awareness is the key to attracting more funding for research into vitally important areas. It is also absolutely at the heart of our vision of ‘optimal outcomes for people living with epilepsy’.

We need your help in forging acceptance, compassion and understanding for those with epilepsy.

Increasing awareness comes from doing things like dressing in purple and fundraising in creative ways on Purple Day (March 26th). It is the result of putting up a seizure management poster at your workplace, or talking to others openly and honestly about your experiences with epilepsy. You will be surprised at how interested most people will be in your story and keen to help.

Things are Trending in the Right Direction

During 2018, we will continue to be inspired by the brave individuals and families who are affected by epilepsy, and commit to delivering more services that will make a real difference to lives.

I am mindful that even though it is the ‘holiday’ season, unfortunately epilepsy doesn’t take a break for Christmas. Our thoughts are with you, and if you need advice, support or just to talk to someone who understands, we are only ever a phone call away.

Best Wishes,
Carol

I know there was a great deal of upset, especially amongst ‘epilepsy parents’, following comments made in an ABC Brisbane television news item on the evening of 19 September. The segment covered the story of a father who is pleading with the Queensland Government to allow his 8 year old daughter, who has a regressive neurological disorder that causes chronic multiple seizures, access to medicinal cannabis oil while she is in hospital. Essentially a comment made on behalf of the medical sector caused the upset: “children in particular have presented in hospitals with comas and died from cannabis oil”. Epilepsy Action has done some homework on this topic and I share with you now the body of the letter that I have written to the Australian Medical Association.

“I refer to a news article on ABC television on the evening of 19 September 2016 about medicinal cannabis and children with epilepsy, in particular the Peek family. Comments made by you in this interview have caused anger, concern and in some cases fear within the epilepsy community. I write this letter in the hope that it serves to explain the reasons for this and to seek your assistance in ameliorating the situation.

In my role as CEO and Managing Director of Epilepsy Action Australia I have had significant contact with many families faced with difficult decisions in managing their child’s unrelenting and debilitating seizures as a result of epilepsy. In often dire circumstances, some parents in Australia have been willing to try anything to help reduce the severity and frequency of their child’s seizures and improve their quality of life. Parents, who hoped that their child might respond to cannabis oil, have desperately sought access to any source of ‘medicinal cannabis’ oil or tincture they could find, with the uncomfortable knowledge that it was considered an illicit drug in Australia.

Having presented at the Senate Inquiry into the Regulator of Medicinal Cannabis Bill 2014, sitting on the Steering Committee for the NSW Clinical Trials, acting as a co-investigator in the PELICAN project (NSW and QLD) and serving on the Board of the Lambert Initiative at Sydney University, I fully support legal and medical pathways undertaken to provide medically prescribed, quality controlled medicinal cannabis to people with epilepsy, however quality research and changes to existing laws takes time. Sadly, time unfortunately is not something that many of these children have.

We understand the legal issue: While medicinal cannabis (or marijuana) use was lawful in Australia until the 1950s, cannabis cultivation and use is now illegal in all Australian jurisdictions for any purpose, even though the international drug treaties to which we are party permit the medical and scientific use of drugs whose recreational use is prohibited. Obviously Australians benefit from the medical use of drugs such as morphine, ketamine, cocaine and amphetamine, despite their recreational use being prohibited.

We also understand that human clinical trials for CBD and epilepsy are in early phases, and that while CBD has been examined as a potential anti-epileptic in humans, these early studies have not been followed up with larger and more convincing clinical trials over a longer period.

On the other hand, we understand from social media and other sources that a number of consumers (parents) in Australia are gaining access to medicinal cannabis to treat seizures. Given the catastrophic and debilitating nature of their children’s epilepsy conditions it is not difficult to understand their desperation. These parents report immense improvement in the severity and frequency of their children’s seizures and overall quality of life. However EAA is of course concerned that these consumers may be using home-grown and black market cannabis of uncertain medicinal quality, and these desperate parents are breaking the law.

We understand that there are inherent risks in use of unregulated cannabinoid based products however if there was legal laboratory testing available, the risks of potential contaminates would be avoided and parents would be aware of the cannabinoid ratios and terpene profiles of the product they are using. This would indeed provide sensible and effective medium term risk mitigation.

I want to refer specifically to your comments in the television interview that “children in particular have presented in hospitals with comas and died from cannabis oil”. If there had been a child death in Australia related to cannabinoid intoxication a Coroner’s inquest would have been required to investigate the death. We cannot find any such listing.

I understand that you spoke yesterday to a medicinal cannabis advocate and that you stated that your information came from Colorado. From our research, I must assume that your comments in fact relate to the accidental ingestion of marijuana edibles (usually owned by the parent or other adult) rather than the children being administered medicinal cannabis oil for specific health conditions. This is more an issue of labelling, child proof packaging and adults being responsible in storing their product.

I believe it would be appropriate, and indeed highly appreciated by parents in the epilepsy community, if you would retract the statement made, or at least provide further detail and accurate context for your statement. I offer the assistance of my organisation to assist in any way possible with education and support in this situation.

Finally, I would like to refer you to an article in the Medical Journal of Australia by David G Pennington (Med J Aust 2015; 202 (2): 74-75) titled “Australia is behind the times on the medical use of cannabis”. It makes for interesting reading on this difficult topic.”

So another Purple Day has come and gone. I am reflecting on the successes, the highs and the lows, the mixed emotions that were expressed over the past few days.

I remember some years ago when I first heard there was going to be an epilepsy ‘day’ thinking “oh no, not another ‘day’. There are so many already”. As I let the possibility sink in, I actually understood that having an ‘event’ like Purple Day was very right for the epilepsy condition. After all, hasn’t the World Health Organisation said “there is probably no condition more neglected………”?

Each year I have watched Purple Day develop a little further so that awareness of epilepsy in the community can grow a little more. This is, at its heart, the intention that young Cassidy Meagan had when she started the day in Canada back in 2008.

I was however, a little disheartened to see some divisive comments and criticism related to Purple Day and epilepsy on social media. Looking beyond the actual words, I think some were asking: Why should we celebrate? Should it be a fundraiser? Is it about raising awareness? Why commemorate?

Purple Day means many things to different people and I want to acknowledge this.

  • To those who are seizure free, they may well be celebrating a milestone. Let’s celebrate with them.
  • To thousands who live with the condition, they celebrate that at this time it is spoken about openly in the community and in the media.
  • To those who continue the struggle with debilitating and uncontrolled seizures, for themselves or their loved one, the day may evoke pain and misery. Let’s comfort and support them as they courageously fight the impact of epilepsy.
  • To those who have lost someone they love as a result of epilepsy, the day may be a tribute and a commemoration. Let’s remember those that have been lost.
  • To those who strive to deliver (free) services and support to those who need it, the day is a fundraiser, asking the public for help when awareness may be at its height.
  • For those who seek to educate, it is an opportunity to spread key messages.

I say Purple Day should be all of these and together, I think we can chalk up success for 2016. For all of us, more awareness in the community is something to celebrate. United we stand.

The Hon Sussan Ley MP
Minister for Health

Dear Minister

I write on behalf of many families in Australia who have children with devastating, medication resistant epilepsy. I also write to you on behalf of adults who have lived for many years with unrelenting seizures that have made it virtually impossible for them to lead a quality life and participate fully in their communities – a right afforded to most of us.

There are approximately 250,000 people in Australia who are diagnosed with epilepsy. Some 800,000 people will be diagnosed in their lifetime. The severity and frequency of seizure activity varies widely in people living with epilepsy. Approximately 65% percent of people diagnosed with epilepsy have their seizures well controlled on the first or second anti-epileptic medication they try. The remaining 35% percent, unfortunately, continue to experience seizure activity despite trying numerous combinations of currently available anti epileptic medications. They are considered to have intractable (medication resistant) epilepsy. Of this group, some are diagnosed with catastrophic types of epilepsy, where they suffer recurrent severe and damaging seizures on a daily basis. This is a devastating fact of life for many families in Australia where tragically death, before the child reaches adulthood, could be the outcome.

In my role as CEO of Epilepsy Action Australia I have had significant contact with many families faced with difficult decisions in managing their child’s unrelenting and debilitating seizures as a result of epilepsy.

Having presented at the Senate Inquiry into the Regulator of Medicinal Cannabis Bill 2014, and sitting on the Steering Committee for the NSW Clinical Trials: Medicinal Use of Cannabis in Children with Severe, Drug Resistant Epilepsy, I fully support the legal and medical pathways undertaken to provide medically prescribed, quality controlled medicinal cannabis to people with epilepsy, however quality research and changes to existing laws takes time.

Time, unfortunately, is not something that many of these children have.

In October this year I was proud to stand beside the NSW Premier and the Minister for Medical Research as they announced the partnership with GW Pharmaceuticals and the innovative trial and compassionate use that will be made possible. I have also committed Epilepsy Action to working closely with The Lambert Initiative for Cannabinoid Therapeutics which has been established at the University of Sydney to launch the PELICAN study (Pediatric Epilepsy Lambert Initiative Cannabinoid Analysis) in coming months.

For many of us, the medicinal cannabis ‘movement’ in Australia is encouraging – it seems to be gaining some momentum.

For those who live each day with relentless seizures as their reality, they are deeply discouraged and cannot afford to wait for political and regulatory processes, and research and clinical trials, to slowly unfold.

It is therefore with mixed sentiment that I write to you about your recent announcements. I congratulate you on your move to “create one single, nationally-consistent cultivation scheme, rather than eight individual arrangements”. This needs to go further. Epilepsy Action Australia supports any activity that expedites the provision of a national framework for the legal access to medicinal cannabis products for research and medicinal use. Indeed a matter for a national response, a single nationally consistent scheme is the only way to ensure that people in all states and territories will ultimately be able to legally and safely access medicinal cannabis products.

However, families are confounded with messages about state regulations, national regulation, cultivation, supply, access, legislative processes, trials and so on. And timelines continue to change……

With all due respect, cannabis has a 5,000 year history of medicinal use.

In more recent times, new hope for parents of children with devastating epilepsy has come from overseas via the positive results of early research and clinical case studies of treatment options that can significantly reduce the severity and frequency of seizures – treatments that are derived from the cannabis plant.

In often dire circumstances, some parents in Australia have been willing to try anything to help reduce the severity and frequency of their child’s seizures and improve their quality of life. Given the catastrophic and debilitating nature of their children’s epilepsy conditions it is not difficult to understand their desperation. Parents who hoped that their child might respond to cannabis oil, desperately sought access to any source of ‘medicinal cannabis’ oil or tincture they could find, with the uncomfortable knowledge that it was considered an illicit drug in Australia.

I have personally heard and seen the changes in some of these children’s lives after the administration of various preparations of unregulated forms of medicinal cannabis. With reports of their child’s seizures diminishing from 10, 20, 50,100 a day to as few as one or several in a month, or even complete seizure freedom, whilst also regaining function thought forever lost or reaching developmental milestones never thought possible.

Minister, patients and their carers are being forced to break the law to obtain and to use cannabis, mostly without medical supervision because they are fearful to expose themselves. The medical evidence is available and opinions world-wide are changing based on this evidence, yet legal access seems far away. In many instances, too far away to save some lives.

These parents report immense improvement in the severity and frequency of their children’s seizures and overall quality of life. Yet they cannot legally disclose the use of the medicinal cannabis to members of their health care team due to mandatory reporting, and yes, some families have found themselves being interrogated by government agencies as a result of disclosure, so families are ‘flying blind’, unable or unwilling to disclose the use of medicinal cannabis, denied of the medical monitoring and advice they so desperately want and need.

Added to this burden, families cannot legally have the product laboratory tested to ensure that what they are administering to their beloved child is in fact what they believe it to be. Therefore they cannot be assured that it is free of toxins or contaminates nor know the THC:CBD ratios. These parents meticulously monitor their child’s responses to the product and adjust the dosage and frequency of administration, much like neurologist do with conventional antiepileptic drugs, something they have experienced many times.

From the outset Epilepsy Action Australia has understood the legal issues in Australia: that cannabis cultivation and use is not legal in any Australian jurisdictions for any purpose, even though the international drug treaties to which we are party permit the medical and scientific use of drugs whose recreational use is prohibited.

Concern has been expressed that these consumers are using home-grown and ‘black market’ cannabis of uncertain medicinal quality, and that these desperate parents are also breaking Australian laws. Depending upon the state or territory where they reside and the stance or benevolence of the local agencies, families are treading a fine legal line that in normal circumstances they would never choose to cross. However, in a bid to save their children and improve their quality of life they have been left no option when all other treatments have been exhausted. Some parents have been told that there is nothing left in the conventional treatment bucket, while their child continues to experience hundreds of seizures a week, further delaying their development or worse, causing further damage to their already compromised brains.

Anecdotal reports of families desperately trying to source cannabinoids to treat their child’s epilepsy range from periodic trips to the USA and other regions where it is legally prescribed and monitored by a physician, to others accessing illicit recreational markets where the strength or strain is unknown and personal safety is at risk. The other alternative has been to grow from seed, a particular strain believed to be low in THC and high CBD, and extract the oil themselves, thus knowing that it is pure oil without contaminants or pesticides.

Often this is the only way that parents feel they can possibly access a product that offers hope for their child – hope that their child will experience fewer debilitating seizures a day; hope that one day it will be legal, medically prescribe and monitored, and offered on the PBS; hope that their child will begin to reach developmental milestones they thought would never be reached.

Time is of the essence for these children. Illicit supply is the only option at this point in time, despite the Therapeutic Goods Administrator recently reclassifying cannabinoids, the non-psychogenic compounds of cannabis, as a Schedule 4 drug.

Time is not on their side and while parents are asked to wait for legal medicinal sources to become available, their children’s brains are further compromised and lives at significant risk due to uncontrolled seizure activity.

I reiterate that Epilepsy Action Australia supports any activity that expedites the provision of a national framework for the legal access to medicinal cannabis products for research and medicinal use, but I implore you and your colleagues to work swiftly to achieve this whilst also providing interim protection for these families and their support networks growing, making and administrating these products for medicinal use from prosecution and threat by government authorities to remove children from the care of their families.

Leadership is required. Heroes are needed. Surely we must use all energy to break through the regulatory quagmire and at the same time grant amnesty and show compassion.

People should have the right to choose a treatment which is beneficial to them, whilst being protected from arrest and prosecution. The human body has an endocannabinoid system and makes its own cannabinoids to maintain homeostasis. Surely if someone has a deficiency in their own endocannabinoid system they have a biological right to medicine from the plant that the human body is physiologically designed to receive.

Minister, please advise me if there is any way that Epilepsy Action Australia can assist you to work towards the goals I believe we all share? It would be a privilege to assist the government to achieve swift and positive outcomes. I appreciate your time to read this correspondence and I anticipate your response.

Yours sincerely,

Carol Ireland
Managing Director and CEO
Epilepsy Action Australia

On the 27th October I was privileged to stand beside Premier Mike Baird, the Hon. Pru Goward, Minister for Research, and Dr John Lawson in announcing an exciting development in medicinal cannabis treatment for children with severe epilepsy at the Sydney Children’s Hospital.

Later in the day Minister Goward was the first speaker at Epilepsy Action Australia’s special presentation: “Voices behind the issues – Medicinal Cannabis”.

The second speaker was the indomitable Michelle Whitelaw – parent, advocate and fearless medicinal cannabis campaigner who has taken a courageous and unrelenting stance to raise awareness of medicinal cannabis and her son Jai’s journey with epilepsy.

Finally, two of the key research leaders from The Lambert Initiative at the University of Sydney spoke about plans for building a platform for extensive clinical and scientific cannabinoid-related research.

The session was informative and lively – as it should be on this crucially important topic. Finally it feels as though progress is gaining some real momentum!  Click here  to view the presentations from the day,

For more information regarding the NSW clinical trials for children with severe epilepsy, click here or call 1800 217 257.

Epilepsy Action Australia also publishes regular email updates on the progress of all aspects of medicinal cannabis use in epilepsy in Australia. Click here to register to receive these updates.

Warm regards,
Carol Ireland