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
Like any expectant Mum, Natalie is excited about the future, but having epilepsy means keeping her baby boy safe is more complicated than usual.
ou can read more about the stories of Natalie, Damian and Ava in our Taking Action newsletter.
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