As 2019 almost wraps up, I wanted to reflect on all that we have achieved throughout the year. As always there’s still so much to be done but we’ve had some major triumphs and kicked some pretty big goals this year. I wanted to remind you of just some of these wins and to promise you that we are still clear on our priorities and are forging full speed ahead to our next goals. I like to call this the ‘proof in the pudding’ we’ve worked hard this year to bring some new resources and products to our community and we hope you will agree.
In June, The EPILEPSY NURSE LINE was launched, funded by the Australian Government Department of Health. The Epilepsy Nurse Line is an Australian-first phone and email service to support people living with epilepsy and their families.
This service is available 9am to 5pm seven days in all Australian states and territories on 1300 EPILEPSY (37 45 37) or [email protected] Each call via the Epilepsy Nurse Line is answered by a Registered Nurse with special training in epilepsy management, so callers can trust that the information they receive will be accurate and safe.
This service has been developed specifically to improve health outcomes for people affected by epilepsy. The Epilepsy Nurse Line is especially life changing for people living in rural and remote regions of Australia, who may have limited access to medical professionals trained in epilepsy management.
Our latest website was launched in September to help thousands of Australians living with epilepsy, particularly those with devastating medication resistant types, make informed choices when it comes to medicinal cannabis. www.C4E.com.au is the first evidence-based website to provide the latest published research from Australia and around the world, tools, fact sheets, videos, life stories and other resources related to medicinal cannabis and epilepsy.
The website is for a range of people, including children and their families who live with intractable or medication resistant epilepsy. 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. While some have been able to access medicinal cannabis, many others are still hoping for answers and relief from seizures. This website offers accurate, reliable and evidence-based information for those seeking it.
Medicinal cannabis can be life-changing but it is not a ‘silver bullet’ and it is not advisable for people or carers to consult ‘Doctor Google’ for something so important. Research is constantly evolving and, like any medicine, the right dose, the right quality and the right treatment plan are essential to success.
This website was made possible with the support of nib Foundation, MCG Pharma etc etc (include logos)
SUDEP occurs in approximately 1 per 1000 people with epilepsy, with the risk lower for children with epilepsy (approximately 1 in every 4,500 children with epilepsy), but it is something to be aware of and discuss with your child’s doctor.
While we don’t yet know the cause, research has identified risk factors that are associated with SUDEP. These include the type and frequencies of seizures (with the number of tonic clonic seizures per year increasing the risk), nocturnal seizures and young adults between the age of 20 and 40 years.
It is important to remember that risk factors are individual for each person and can change over time. The most important step you can take to avoid SUDEP is to try and reduce the number of seizures you have. It is imperative that people living with epilepsy understand the critical importance of taking their medications on time and not modifying their prescribed dose without medical supervision. Lifestyle and treatment choices are also very important.
To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia launched the SUDEP and Seizure Safety Checklist in October. The Checklist is the first clinical tool in Australia to assist neurologists, GPs and other health practitioners to discuss and monitor risk factors with their patients aged over 16 years. It is used in a 10-minute consultation that provides the latest evidence on risk factors for premature mortality in epilepsy.
The SUDEP and Seizure Safety Checklist was originally developed in Cornwall (UK) as a collaboration between SUDEP Action and Cornwall Partnership NHS Foundation Trust in 2015 and is supported by leading experts. Partnership between Epilepsy Action Australia and SUDEP Action has enabled this Checklist to be made available in Australia.
You, your families and loved ones are at the heart of Epilepsy Action. We have been listening to you – on social media, in emails and phone calls, and in surveys. We have heard what you are saying. Together, with clear priorities, we can build a better future and that’s why we launched the Purple Project. This project saw myself (and many of the staff) talking in rhymes, highlighting everything and every word beginning with P and pushing it out to the people – you guys! Even the title of this CEO Blog is still playing on those P’s! Whilst it has an element of fun, this project is also very serious. It dictates our priorities and promises to you for a better future. Our commitment to the following:
ROVIDERS: People with epilepsy need better access to specialist health care. We will develop a range of initiatives to improve access. We can do more to ensure that people living with epilepsy have the best possible access which is timely and convenient to a range of skilled providers.
REVENTION: We must tackle epilepsy related deaths, especially those resulting from Sudden Unexpected Death in Epilepsy (SUDEP), and others that are clearly preventable. We will fund and develop healthcare tools and health care practitioner education to help minimise risk.
OSSIBILITIES: There are numerous antiepileptic medications available, but they don’t work for all people or seizure types, and sometimes their side effects are intolerable. We will support research and advocate for new accessible and affordable treatment options, including the newly emerging area of cannabinoid therapeutics.
Everything you have just read, all our new services and products launched in 2019 are part of these 3 P’s and our priorities. We have lots more to come too, 2020 will bring even more promise.
If you haven’t signed that Purple Pledge yet, don’t delay! We want you on this journey with us. We want you to be involved. If you are already a Pledger, please share the gift of purpose over the coming weeks and get your friends, family and others to sign too. Sharing is free, pledging is free, promising to be a part of a better future is free. Together we can do so much more.
I am so excited for what 2020 has in store for us. It will be a lot of hard work and determination, but I am positive that the benefit to you all will be worth it. I want to take this opportunity to wish our community a safe and happy Christmas. I know that seizures don’t always stop during the holidays, but our thoughts are with you and as always, our team are only ever a phone call or email away.
Since 1952, Epilepsy Action Australia has been supporting people with epilepsy. More than 250,000 people in Australia have epilepsy and more than 800,000 of us will be diagnosed in our lifetimes. Epilepsy can have a profound impact on individuals, families and entire communities and as such, there is still much to be done to minimise this impact and provide opportunities for better lives and futures.
Across the world some 65 million people are diagnosed with epilepsy. It is a global issue and a condition that is often still surrounded by myth and misconception. Every day, more children and adults are diagnosed and despite currently available medical treatments, more than a third of those with epilepsy will not find an effective treatment option. For some, the side effects of the currently available antiepileptic drugs may be intolerable and many people suffer life long negative side effects as a result of these drugs.
Epilepsy Action has a long standing track record of powerful impact and positive outcomes. For decades we’ve provided support that is readily accessible to people with epilepsy, their families and carers, no matter where they live in Australia. Epilepsy Action is close to the people it serves: You, your families and friends. You know us.
For the years it has been serving the community, Epilepsy Action has raised the required funding through the generous support of the community, with only a small amount of funding from government. We are motivated and directed by the needs of those we serve.
There is much to be done and often limited resources present a barrier to moving forward.
We have been listening to you – on our social media, through your emails and phone calls, and via your feedback in our surveys. We have heard what you are saying. Together, with clear priorities, we can build a better future and that’s why we are launching:
ROVIDERS: People with epilepsy need better access to specialist Health Care Providers. We are developing a range of initiatives to improve access. Our first initiative is the Epilepsy Nurse Line which was launched in June this year, with funding from the Federal Government. This provides real time access to Registered Nurses, across Australia, seven days a week. We can do more to ensure that people living with epilepsy have the best possible access to a range of skilled providers, in a way that is timely and convenient.
REVENTION: There are too many epilepsy related deaths. We are currently developing initiatives to work towards reducing epilepsy deaths, especially those that result from Sudden Unexpected Death in Epilepsy (SUDEP) and others that are clearly preventable. We are working to fund and develop new healthcare tools and education for health care practitioners that will help minimize risk.
OSSIBILITIES: While there are numerous antiepileptic medications available, we know that they don’t work for all people or seizure types. We need to encourage and support research, to advocate for new treatment options including the newly emerging area of cannabinoid therapeutics, and ensure they are both accessible and affordable.
P is a great letter isn’t it? It is at the beginning of many beautiful words. Lately we have been thinking about the next Purple Day (2020) and I came to focus on the letter P. It got me thinking about our Purpose – why we do what we do … and it is all about the People!
Will you Pledge to support the Purple Project?
I’ve also been thinking about my own role in Epilepsy Action. I often describe myself as a “patient advocate”. Perhaps I am a Protagonist (definitions: a proponent for or advocate of a political cause, social program, etc.; the leader or principal person in a movement, cause, etc.). ?
Epilepsy Action needs your support to work with us in Partnership. This is my Personal Plea for you to commit to action4epilepsy now and help us implement the Purple Project.
Click here and be part of People Power – together, we can minimise the impact of epilepsy on children, adults and whole families and provide opportunities for better lives.
Warmest regards and thanks,
P.S: A Proponent is an advocate or supporter of a course of action, we can’t do this without you! Please take the pledge now – click here.
What would the world be like without ‘hope’? I cannot imagine and I’m sure you couldn’t either. I want to share with you our latest fundraising campaign and the hope that research can bring to many families living with epilepsy. Epilepsy Action is dedicated to supporting innovative research that significantly impacts the diagnosis and treatment of epilepsy. Can you help us take action to transform lives and bring a little hope by supporting these vital research programs?
‘Hope’ – such a simple word. But a potent one for those with epilepsy, and their families.
Most people with epilepsy dare to hope for a future where seizures are well controlled, and ultimately a cure for epilepsy exists.
Research is the way we transform hope into reality. It is the key to a world where children no longer suffer 20 or more seizures every day; where pregnant woman don’t fear for their baby’s safety; and where someone will not die suddenly, leaving a devastated family behind.
Epilepsy remains one of the most underfunded and misunderstood conditions in Australia. And we need your help to change that dire situation.
We are the partner and major supporter of The Australian Pregnancy Register (APR) – research that has been responsible for important findings that have changed prescribing practices and led to fewer birth defects in babies of women who have epilepsy.
Like any expectant Mum, Natalie is excited about the future, but having epilepsy means keeping her baby boy safe is more complicated than usual.
Research from The Australian Pregnancy Register (APR) has linked certain antiepileptic drugs (AEDs) to birth defects, so it was important that Natalie change her medication as soon as she decided to start a family.
Natalie is grateful that this research has helped ensure the health and normal development of her son. She has volunteered to be part of the APR study throughout her pregnancy and for a year after the birth.
Tina watched her 10-year-old son Damian die in front of her – suddenly and without a reason. One minute he was dancing in front of the TV, the next he told his Mum he was scared, and then he was gone.
Four years later, Tina and her family still struggle with the loss of their happy and affectionate son and remain frustrated that they still don’t really understand why he died.
SUDEP (Sudden Unexpected Death in Epilepsy) is when a person with epilepsy dies suddenly and prematurely and no reason for death is found. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart.
Epilepsy Action has joined forces with leading international organisation SUDEP Action (UK) to increase awareness, and to drive increased research into the causes and prevention of SUDEP in Australia.
Four years ago, 13-year-old Ava was experiencing up to 30 seizures every day and didn’t sleep more than three hours at a time.
Following two failed brain surgeries and having already tried the anti-epileptic medications available, her exhausted parents tried Ava on a few drops of medicinal cannabis oil.
Her Mum Joelle says that within two weeks her seizures stopped completely. Today Ava experiences on average only two or three small seizures a week and can do more than her parents ever dreamed she could.
There are a number of positive stories of children like Ava who have been helped by medicinal cannabis, but much more work is needed to ensure that effective and safe treatments can be available for the future.
Epilepsy Action is heavily involved in advocating for more research and development of effective medicinal cannabis products and has collaborated with the University of Sydney in the PELICAN project (Paediatric Epilepsy Lambert Initiative Cannabinoid ANalysis). This work has the potential to uncover new and more effective medications for the treatment of childhood epilepsy.
Please take action today and make a tax-deductible donation so that we can further support and fund research and medical trials that will make the future so much brighter for those with epilepsy.
With many thanks in advance,
You can read more about the stories of Natalie, Damian and Ava in our Taking Action newsletter.
As the festive season draws nearer, I wanted to share with you our latest fundraising appeal. Meet Caitlyn and her best friend Brooklyn (a Ted-E-Bear). Help us give comfort and joy this Christmas through our Ted-E-Bear Connection program.
As the holiday season approaches, we are reminded that one of the best feelings in the world is giving. The positive energy is contagious. With just one act of kindness you can help change the life of a child who feels loneliness and isolation.
Your generosity allows us to give “powerful” gifts to children affected by epilepsy, who often struggle with learning difficulties and the loneliness of being different.
Helping fund our Ted-E-Bear Connection Program is one of the special ways you bring comfort and smiles to these children. But there is much more to this gift! Every cuddly Ted-E Bear sent out is accompanied by very special information resources to help a family better understand epilepsy and manage the condition. And of course, they are linked to us for ongoing support if it is needed.
Each Ted-E-Bear bear is dressed in purple (the international colour for epilepsy) and comes with a unique name and adoption certificate. And for most children, this special bear becomes the one they want to cuddle as they face more medical tests or recover from yet another distressing seizure.
Bringing Courage And Comfort
That has certainly been the case for nine-year-old Caitlyn who received her gorgeous Ted-E-Bear, Brooklyn a couple of years ago.
Her Mum, Tanya says Brooklyn the bear is “everything” to Caitlyn, and she will never forget her smile when she received the package in the mail.
“I had seen the bears on the Epilepsy Action Facebook page and knew Caitlyn would love one, but I just couldn’t afford it. I was over the moon when I found out that she qualified for a free bear.
“The day Brooklyn arrived, I honestly have never seen Caitlyn so happy. Epilepsy is a horrific disease, and Caitlyn goes through so much but when she received that bear, it was the best day ever. Nothing else mattered,” Tanya says.
Diagnosed at the age of three, Caitlyn has suffered regular convulsive seizures that often last for over five minutes.
Tanya says that at times her seizures have been truly frightening, and they have only had temporary success in controlling them with medication.
Brooklyn Is Her Best And Only Friend
Her condition has also taken its toll on her ability to make friends. Caitlyn doesn’t receive party or playdate invitations, and only a few children have been willing to play with her at school.
And that is why Brooklyn the bear has become Caitlyn’s very best and only friend in the world.
“It breaks my heart that Caitlyn doesn’t have friends. I try to explain to other parents that just by playing with Caitlyn, their child won’t get epilepsy, but they don’t listen. My eldest son also has epilepsy and the stigma and ignorance about the condition are staggering.”
Thank You for Your Generosity
For Caitlyn – a beautiful “pocket dynamite” who likes to cook, play footy, and look after her baby brother – her Ted-E-Bear, Brooklyn brings security and love to what can be a very complex world.
“When Caitlyn has seizures, it’s Brooklyn who gives her the most comfort; it’s Brooklyn who will go in the ambulance with her. These bears make such a difference,” says Tanya.
Since Epilepsy Action Australia introduced the Ted-E-Bear Connection Program in 2012, we have been able to send out nearly 1800 bears to deserving children and their siblings.
With your help, we hope to send out many more packages across Australia, to educate families and bring comfort to children with epilepsy.
This holiday season, I hope you will give the gift of giving by making a tax-deductible donation or committing to regular contributions so that we can fund crucial medical research and continue to provide our diverse and valued services.
Wishing you safe holidays, and a Happy New Year.
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.
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.
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!
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!
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.
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.
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.
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:
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.
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.
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.
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.
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
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.
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,
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.