A mothers battle against the stigma opens up doors for medical cannabis in Australia. Lanai Carter explains her journey to date, where it appears, cannabis oil is the only viable treatment. You can follow the progress on their Facebook page, and should you wish to aid them with their ongoing battle, you can support them here.
Tell us where your story began.
Our son Lindsay aged 19 was diagnosed with a brain tumour (Glioma) in July 2013 after 2 years of debilitating illness.
In July 2013 our lives changed forever. Just as he was asking his father to help him write his first Resume (CV) so that he could finally start looking for a part time job he fell face first onto the tiled floor suffering a grand mal (Tonic Clonic) seizure. As a result of the seizure the hospital ordered a brain MRI a couple of weeks later and this is when they discovered a brain tumor located in the left temporal lobe. This brain tumor causes epilepsy.
Upon diagnosis we were told by a Neurosurgeon that surgery was not recommended due to the impact it could have to his critical function especially his language and comprehension. This was not at all what we expected to hear.
Our son suffers intractable epilepsy (intractable epilepsy is when seizures cannot be controlled effectively by anti-seizure medication), he can suffer up to 20 seizures in a day, he also suffers pain, nausea, vomiting and lack of appetite and Cachexia.
Seizures have become a very normal and scary part of our daily lives and Lindsay requires 24/7 supervision because of seizures and the risks that they pose.
Lindsay has both tonic clonic (grand mal) seizures and focal seizures. He has had seizures at school, in a swimming pool, at work, in shopping malls, in his sleep, anywhere really! The seizures impact him unexpectedly most of the time, occasionally he will have an aura before them but other times they hit him without any warning which can be dangerous.
The focal seizures Lindsay has can cause “speech arrest” for hours which leaves him unable to communicate and often he also cannot understand others. Imagine what it would be like if you couldn’t understand others or communicate, this is incredibly frustrating for him. He is about to learn some sign language to help him during these times. Lindsay has also had many seizures where he has aspirated and at times ended up with pneumonia and complications from that. He is unable to get a drivers licence or operate a motor vehicle, so just at the time of life when he should be able to gain a real sense of independence he has to rely on family and friends to drive him everywhere.
Lindsay has already travelled overseas for most of 2014 for treatment which was successful. Overseas the treatment options available including medical cannabis helped to effectively control his seizures, pain, nausea and also help to reduce the size of his tumor and swelling around the tumour, this meant that he had a far better quality of life. Lindsay also had some integrative treatment overseas with an amazing team of doctors.
Why did you turn to medical canabis?
Lindsay started Medical Cannabis because it was recommended by a U.S. doctor for his condition, he had been working with a doctor in the USA and having some other integrative treatment first but it appeared that the brain tumor was not responding at the time, this doctor then recommended Lindsay travel to a state where he could have medical cannabis as he believed it would help his tumor and epilepsy.
Lindsay was also not getting effective seizure control just with anti-epilepsy drugs, we also wanted solutions for his pain, nausea and vomiting. When we were told that he wasn’t recommended surgery due to the risks to his speech we wanted to consider non – invasive options that would not rob him of the ability to communicate, learn and understand others. Medical Cannabis at the time was showing great promise for Epilepsy, there was also some limited research evidence (especially in vitro research evidence) of its potential as a treatment for Gliomas (Brain Cancer), there was also strong history of cannabis being used for pain, nausea, wasting (Cachexia). We researched this option and decided it was worth trialing for Lindsay and the result was incredible, at one stage within 7 weeks of starting the medical cannabis oil Lindsays tumor reduced by 7 millimetres. Unfortunately when he returned to Australia his tumor did start to grow again until he started on oil again.
The cannabis relieved Lindsays seizures so much, when he was overseas on medical cannabis he only suffered two tonic clonic seizures in a year, he would still experience a few focal seizures per week but considering how he could be this was amazing. The only times he had tonic clonic seizures overseas was when he ate bad sushi at the supermarket and got food poisoning and was not able to keep his medicines down and ate too much one night and vomited up his medicine.
What were the barriers in Australia?
The first barrier was getting the laws changed in our state.
The main barrier in Australia now is the time it takes for most patients to be approved medical cannabis but costs are also a significant factor.
Another barrier is the lack of products currently available, we still cannot get the right oil into the country for Lindsay.
In our state of Qld its possible that a patient may be waiting at least 6 months before medical cannabis can be dispensed by the patients pharmacist. The process for individual patients is complex and involves officials and bureaucrats making decisions for a patient instead of a treating doctor who understands the urgency and the patients history.
Patients are left with little dignity or privacy in this process, the process causes more stress and hardship than relief. In my sons case I would estimate that at least 60 health officials and bureaucrats were involved in handling and assessing his application. The application from the doctor to our state health department along with supporting information was 196 pages long, there were significant delays in approval.
Also if a patient requires any change to dose, ratio, product or supplier this could take up to 3 months for changes to be approved by the state health department and then the whole import/export process needs to be completed again.
Another barrier was that we are not able to have the same potency of medical cannabis oil imported that was recommended and used successfully overseas, this is just due to global availability and supply at present. The oil that was imported was too weak and he didn’t get the same level of seizure control as he had on previous oils, to date we still cannot import a suitable oil. Most of the oils available are too dilute and Lindsay doesn’t get good seizure control on CBD oil, he requires a full extract oil with all cannabinoids present.
After the second approval for Lindsay’s vaporized medical cannabis there was a gap in supply of his medicine for 7 months. This delay was caused by the lengthy application process as well as import/export processes, over regulation and supply issues. This caused Lindsay more hardship, stress and some weight loss.
The application processes are very clunky. In the State of Qld the “patient class prescriber” method (the process which general practitioners must do for individual patients) involves a duplicated application process where the doctor must apply to both the state and federal government for approval to treat their patient with medical cannabis.
When the approval is granted then the pharmacist has to order in the medical cannabis which can involve an import/export process which can take approx. 3 – 5 months to import the medicine from overseas. Whilst there are some faster methods of prescribing these must be done by a specialist and most hospitals seem to have a blanket policy where they are not prescribing medical cannabis at all or are only prescribing to limited patients on approved clinical trials that they may be running at their hospital. Specialists in this country are very hesitant to prescribe to patients at this stage. Many patients are not getting their applications approved by the state because a general practitioner (GP) may apply for their patient but without a specialist to support the application (e.g. Neurologist, Oncologist, Pain Specialist) the state don’t seem to be approving even when a GP believes that medical cannabis would benefit their patient, most patients are stuck between a rock and a hard place.
A very limited number of patients have access to medical cannabis products through clinical trials but most of these products are cannabinoid isolates so not suitable for many patients. Lindsay is not eligible for any of these existing trials and the products are not what had been recommended for him. They are not what he has used successfully overseas already, he doesn’t get seizure control on CBD oil.
Currently all medical cannabis through the TGA Special Access Scheme must be imported from overseas because there is no licenced producers in Australia who can sell these products to pharmacies yet. It will be at least 6 – 8 months before some of these Australian based companies can supply patients here.
The Australian government has allowed a small number of companies to do some bulk imports into Australia, most of these products are not affordable for patients requiring high doses with some products costing as much as $5000 per month or more.
The most recent barrier we face is that one of the products that had been approved for Lindsay the supplier has said its no longer shipping that product to Australia. Attempts to find another affordable supplier who can ship this product to Australia have failed. Most are saying that the Australian regulations and export delays are making it commercially unviable for them to ship the cannabis flower, others are enduring delays of 7 months or more with export permits from their country of origin.
How is the progress with medical cannabis so far?
The progress has been incredibly frustrating for patients. The Medical Cannabis programmes available in Australia are over regulated and do little to provide relief, care or dignity for patients and their carers. I could honestly say that patients are dying waiting for medical cannabis or most are turning to unregulated supplies because of the difficulties with access and over regulation.
Have people been supportive in Australia?
Overall the Australian public have been very supportive with 91% of Australians supporting the use of medical cannabis: http://www.roymorgan.com/findings/6517-massive-majority-of-australians-support-legalisation-of-medicinal-marijuana-201510252317
Has Lindsay’s case had an impact in Australia and pushed legislation to change?
Lindsay was the first patient to be approved for schedule 9 botanical cannabis in Australia so it did create a number of precedents. The approvals for Lindsay included an approval for dried cannabis flower for vaporization and also cannabis oil with THC . For Lindsay’s approval it involved a significant amount of lobbying, petitioning and advocacy, we also had to commence multiple legal processes. Through this process Lindsay had the support of an advocate and in the past we had established a patient advocacy group together, along with his advocate and many others we petitioned and advocated for Lindsay’s rights as well as all patients’ rights in our state of Qld. It was through this advocacy and legal processes that the Queensland Health Drugs and Poisons Regulations were changed in 2015 allowing Lindsay’s application to be approved at a federal and state level. At this time Queensland also became the only state to allow general practitioners to prescribe medical cannabis for their patients. This approval also set a precedent for patients needing medical cannabis including THC for their condition and inhaled cannabis for medical purposes.
How has your life been affected in all of this, with career and personally?
I remember the days when we used to have a relatively normal life, now my life seems to revolve around seizures, hoping for stability of the brain tumor on the next MRI, trying to keep my son from losing any more weight and worrying every day about getting my son a consistent supply of medicine that can help alleviate his suffering. It’s like you wake up every day and wonder if it’s all a bad dream and you come crashing down to reality because you realise it’s not getting any better….yet.
After diagnosis in 2013 I put most of my work and study on hold, I had already struggled to work in the 2 years prior when he was showing symptoms of the brain tumor. I had to stop seeing clients in my business when Lindsay was diagnosed with the tumor and started to have frequent seizures, everything changed at that point. I felt terrible having to call my clients and cancel appointments because I was on my way to the hospital again in the ambulance after a seizure.
As a family we have become quite segregated because we often have to separate for activities just so that Lindsay has constant supervision and monitoring, if he is left unsupervised it can be a threat to his life if he has a tonic clonic seizure. We have already witnessed him stopping breathing after one seizure. I know that when he can have consistent supply of the right medical cannabis he can have good control of his seizures. When this happens we can all start to get some kind of normal life back.
The costs of his medical care have been crippling for us, I stopped counting years ago when the costs were well over $120,000, its been much thousands more than that now but you cannot put a price on the life of a loved one, we love our son and will do everything within our power to keep him alive and well.
I often say that going through the stress of all the application processes, delays and the stress of that process feels like it’s taken at least 20 years off my life. It’s hard enough having a child with epilepsy and with a brain tumour without all the added stress of having to endure such processes.
Every day I remember the relief he had overseas, of being able to wake up in the morning and know where his medicine was coming from and know that he could get it efficiently. To know that as soon as the doctor had recommended the medicine he could access it within minutes. Here in contrast in Australia it can take many months for him to get and even then he cannot get the right oil and its simply not good enough to have patients left suffering like this. The government have no idea how difficult that can be on a patient and their family just to deal with the everyday stresses of chronic illness without any extra burden or worry.
I recall the days overseas when Lindsay could get the medical cannabis he needed and focus on having some kind of quality of life. Its days like that when you start to feel like you are getting your life back as a family and you start to see your child experiencing what it’s like to feel normal for a change. But this was hard for us, we had to separate as a family. I had to leave my husband and youngest son on the other side of the world in order for Lindsay to get the treatments he needed for his tumor and seizures. This had a huge impact on us as a family and was very difficult.
I cannot describe the peace of mind I had knowing that this medicine was not only controlling his seizures well but also helping to keep his tumor stable, allowing him to have an appetite and have pain relief, rest and relief from nausea and vomiting. You just cannot put a price on those things. We look forward to those days again in the future, having some normality.
What advice would you give people in the same situation?
My advice would be to never give up and fight for your loved ones rights. I strongly believe that you never run out of hope while there are still options and action being taken. If you stop taking action this is when doubt and hopelessness can creep in. It doesn’t matter how dire the situation there is always something positive that can be done to improve the life of a loved one. Another thing is to also rely on your gut instincts as a carer or patient this is so important. When Lindsay was experiencing 2 years of illness prior to diagnosis my gut was always telling me there was something seriously wrong with his health even though the doctors had misdiagnosed his condition and not done a brain MRI, in this time he saw 5 different specialists and 5 general practioners. Be persistent and never give up on getting the answers and the solutions you need.
We try to remain realistic, we try to hope for the best and work towards positive outcomes. We also try to focus on quality time, listening, understanding and never taking anything in life for granted. Our son is now surrounded with amazing doctors and specialists that have the same positive outlook, those who focus on compassion, relief and dignity. Those doctors take time to listen, understand and support us through this ridiculous rollercoaster. I would also recommend that people prioritise. Know what is most important in your life and focus on those things. Help and support others when you can but always remember to take the time needed to ensure you are strong enough to press forward because it can be like a marathon, an incredibly long marathon! I look at my son every day and know he is a walking miracle. I am certain that he is still alive today because of Medical Cannabis and because I have never given up on him.