70 Days

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70 days doesn’t seem like a long time in the grand scheme of things.
Unless you add on three years to that time, since we first asked for a prescription for cannabis.
Then add another three years..
Six years since we started using cannabis for Jeremy and fighting for his right to legally use a plant to offer him a decent quality of life.
Six years since it got to the point where he started jumping out of moving cars, since he hospitalised one of his support workers, since we had to lock him in our home because it was too dangerous for him to leave. Since his unrelenting explosive behaviours and increased side effects from the three seizure medications he was prescribed at the time sent him into a tail spin that we are still trying to treat to this day.

Over 22 years since he had suspected acute viral encephalitis and his life was turned upside down. Almost 27 years since he had his very first seizure.

 

I don’t know if tomorrow, August 27 2020, after all those milestone dates will bring positive news.
It’s been 70 days since the third treating specialist agreed to apply to the Controlled Access Scheme on his behalf.

What I do know is it will be the last time we ask for a prescription.

 

I hope it is positive news. I hope that if it isn’t that we can find a way to work with his medical team despite the fact 95% of his medicine is homegrown and untested.

Whatever happens, we will be in Jeremy’s corner, just as we always have been.

Patients in Australia needing access to medical cannabis have been slapped in the face yet again

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Bill rammed thru parliament to facilitate export of medical cannabis while Aussie patients continue to suffer, unable to afford imported products …

Patients in Australia needing access to medical cannabis have been slapped in the face yet again by this corporate friendly LNP govt who cares nothing about the suffering of our people.

The Export Control Legislation Amendment (Certification of Narcotic Exports) Bill 2020 rushed through parliament last night, will make it easier for licensed producers to export MORE of our home grown cannabis products, leaving Aussie patients STILL without a reliable, uninterrupted supply of Aussie products.

The Govt says the legislation has been rushed through with the view to “ reduce red tape (and) bust congestion in regulation” (of the govt’s own making); or closer to the truth, it may have had “something to do with negotiations on other issues in the Senate” as suggested by the ALP.

“What stinks is that Aussie patients are being prosecuted left right and centre for self supply because they cant get access to affordable legal products. Something has got to give,” says Ms Lynch president of MCUA of Australia Inc., who will face court in July for cannabis production charges because she has been unable to get a script and could not afford products even if she could get one – like 48% of other prescribed patients right now.

Deb Lynch believes it could be because there is a short supply in legal countries such as the US and Canada who’s back end businesses have been on shut down due the covid 19 crisis. “Cannabis has been deemed an essential service in these countries and there has obviously been lobbying by big cannabis business to make this happen because of the slow uptake by doctors and what looks like low demand.”

“Health Minister Hunt promised in 2018 that Aussie patients would come first. He Lied. And this is further proof that the Govt is still trying to keep cannabis away from Aussie patients.”

Aussie patients continue to struggle with supply problems and ridiculous prices for medicine that is being grown and manufactured here in this country, exported and imported back under international brand names. And now it has been made easier to export Aussie grown products.

Lyn Cleaver, prominent Tasmanian activist who has been growing essential supply of cannabis for her severely disabled son for several years while trying to access legal products, says “I’m still getting told to wait it out..keep doing what you are doing for now..easy for some politician to say when its not them breaking the law”

Meanwhile the recommendations made by the recent senate inquiry into the Barriers to patient access to medical in this country lay idle in their inboxes.

 

MCUA

Cannabis Awareness Tasmania

Grieving Retired Aussie Nurse on a Cannabis Mission

Gail Hester founded Medical Cannabis Users Association of Australia (MCUA) and became a registered, incorporated not for profit association in 2015.

Gail Hester. MCUA. Photo supplied.
Gail Hester. Supplied.

 

Gail, lost her 21 year old daughter to bowel cancer. She set out on a mission to find the truth about cannabis.

 

“The more I researched the more evidence I found that cannabis may have indeed helped my daughter through this very dark time, and that it may well help others”

 

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Gail and her daughter, Sarah. Photo Gail Hester

 

It was that revelation that saw Gail undertake the mission to bring truth to light and encourage others to fight for their own rights to use cannabis. Gail and other members of MCUA work tirelessly to bring about change.

There are many advocates in Australia that are fighting for change but to be honest you’d go a long way to find someone that puts in the hours that Gail pours into this fight.

 

 Read the full story here  

For more information on MCUA 

 

Premier happy with Controlled Access Scheme while patients scramble to secure medicinal cannabis outside the law.

logofinalx2Response from the Premier, the Honourable Peter Gutwein

Dear Lyn,

Thank you for your email regarding medicinal cannabis and the Covid-19 emergency.
Call for Government to Protect Tasmanians Using Medicinal Cannabis

As you are aware, the Controlled Access Scheme (CAS) allows Tasmanians with a serious illness, which has not responded to conventional therapies, access to unproven medical cannabis products when prescribed by a suitably qualified medical specialist. This approach remains available to Tasmanians, and anyone seeking access should contact their GP in accordance with the medical treatment movement restrictions.

The rules related to restrictions under COVID-19 specifies that individuals should stay at home other than for essential purposes. Essential purposes include getting food and groceries, undertaking personal exercise, or attending medical, or health care appointments or for medical treatment.

If members of the community are concerned regarding how to demonstrate their reason for not being at home, there will be opportunities to provide documentary evidence. For example, employers are providing staff with letters identifying the staff member as an employee. People visiting dispensaries may elect to show their scripts or medical certificates as their genuine reason for not being at home. I must note, these are suggestions and it is not mandatory to be able to prove your purpose on the spot.

Beyond these examples, I reiterate that Tasmania Police’s approach to enforcing the law when it comes to personal drug use has not changed.

Thank you for writing to me.

 

Call for government to protect Tasmanians using medicinal cannabis.

©CannabisAwarenessTasmania
©CannabisAwarenessTasmania

We must address serious concerns about the vulnerable state medicinal cannabis users in Tasmania find themselves in during the current COVID-19 health crisis.

There are approximately a dozen patients who have been successful in securing a legal prescription for medicinal cannabis. That number is dwarfed by patients procuring cannabis via either black market or self supply.

On behalf of those patients, many of them using cannabis medicine as mono-therapy, we respectfully ask that you consider some protections be put in place as a temporary measure.

Such protections would benefit Tasmanians relying on cannabis to be well.

In the current climate an immediate moratorium on arrests and confiscation of discovered cannabis for identified medicinal users is paramount.

Currently Tasmania Police have discretion if charges should be laid concerning people using/possessing cannabis. They do not have any such discretion when it comes to cannabis (plant or medicine) that is discovered and they must by law seize.

For Tasmanians using cannabis accessing the alternative market requires them to be out in the community unnecessarily during this health crisis. For those of us who self supply (harvest of our own medicine is currently underway) we are at risk of our medicine being discovered and confiscated.

There is nothing in place to protect these unwell Tasmanians. I am sure during these uncertain times our Government would not wish for medicine to be taken from the seriously ill.

A register for patients legitimately using and/or self supplying cannabis for medicinal purposes – to protect them from possession charges and protection from confiscation as a temporary measure would ease the burden and fear that these Tasmanians face during this crisis.

Discrepancy Between State and Federal Eligibility for Medicinal Cannabis.

jem eeg 4 may 2018“Secondly, I want to clarify: it’s not required that all other options have been exhausted. This is the Special Access Scheme for unapproved medicines.

We have heard today incorrectly that this scheme is only for if every other single medicine has been exhausted”

Professor John Skerritt. Department of Health.

Current barriers to patient access to medicinal cannabis in Australia

 

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Jeremy has trialled and failed over 17 medicines. He has also trialled and failed the VNS implant. He is not a suitable brain surgery candidate. At the time we commenced cannabis therapy his neurologist admitted “I have nothing left to offer Jeremy that will successfully and safely control his seizures”

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This is our experience. As it stands TMAAC requires Jeremy to trial and fail ALL conventional TGA registered medicines before being considered for the Controlled Access Scheme.

 

TMAAC.

After over two years of frustration waiting for a specialist and approval at state level we are still providing Jeremy the medicine he deserves. We again call on the Government to support self supply.
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©CannabisAwarenessTasmania

Current barriers to patient access to medicinal cannabis in Australia

Senate Inquiry into current barriers to patient access to medicinal cannabis in Australia.
January 2020
Cannabis Awareness Tasmania
Lyn Cleaver

Introduction.

In 2014 we began cannabis therapy for our adult son, Jeremy. Jeremy is diagnosed with severe refractory epilepsy and a ‘diffuse’ brain injury resulting from either Suspected Acute Viral Encephalitis or F.I.R.E.S (Febrile Infection-Related Epilepsy) which he contracted at age six in 1998.

Jeremy’s seizure diagnosis is partial onset seizures with secondary generalised tonic clonic seizures.

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Jeremy - Coma RCH 1998
Jeremy is twenty eight years old.
At the time we commenced cannabis Jeremy was suffering from a serious drug induced psychosis from a prescribed anticonvulsant (AED). His treating neurologist informed us at that time he should try strong sedatives. To be clear, this measure was not for seizure control, rather for side effect control. At that time, his neurologist said he had nothing else suitable to prescribe for Jeremy to control his seizures.
Jeremy is not a brain surgery candidate as he has too many seizure foci across his brain. Jeremy was implanted with the Vagal Nerve Stimulator

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at age eleven in an attempt to control his seizures. The device was not successful and while still in situ the generator is switched off due to side effects of uncontrolled coughing when the device malfunctioned during a lead impedance test.
Jeremy is recognised as being at very high risk of SUDEP (sudden unexplained death in epilepsy)

 

We started researching cannabis after discovering the health benefits of hemp seeds (which at that time; still illegal to consume) We were hopeful that cannabis would help with seizure control, the severe insomnia (directly caused by long term use of one particular AED) the toxicity he was suffering (caused by a drug interaction between two of the three AED’s he was taking at the time) and the explosive behaviours linked to the psychosis.
Jeremy was enduring weeks on end with little to no sleep. The toxicity was occurring almost daily where he would be ataxic, vomiting, nauseous and enduring blurred vision approximately fifteen minutes after being given his AED doses twice a day and lasting around an hour.
The psychosis, naturally, was the hardest for Jeremy and those of us around him to deal with. He was a danger to himself and to everyone around him. He hospitalised one of his support workers who was injured during a behaviour. Our daily lives were ruled by explosive behaviours, we locked all the doors and windows, put away objects that could be used as weapons, and basically lived by how he was feeling minute by minute. He was regularly trying to exit moving vehicles.
This was the second time Jeremy had experienced such a devastating psychosis, the first time occurring in his very early teenage years.
However, he was no stranger to unwanted or serious side effects from conventional AEDs below is a brief list of what Jeremy has endured from prescribed medicines;

Gum disease
Allergic reaction (medicine ceased immediately)
Weight gain
Weight loss
Refusal to eat
Relaxed throat muscles (added risk for aspiration)
Chronic insomnia
Cognitive delays
Toxicity
Inability to sweat
Increased seizures
Compromised respiratory function

Up until 2014 there was only one medicine that his paediatric neurologist wanted to prescribe that we were not willing for Jeremy to risk the serious side effect of this drug causing blindness.

When the neurologist suggested strong sedative drugs we knew that it was time to at least try cannabis as a chemical straight jacket is no life for anyone.
We were gifted some cannabis tincture and we commenced that in mid 2014.

It was evident almost immediately that cannabis was helping Jeremy in all the areas we hoped that it would. His sleeping patterns improved, his behaviours improved and his seizures were far less intense.

We then went on to purchase a supply (domestic) online. Evidenced by how well he was and the efficacy of the cannabis we started reducing his AED. We kept both his neurologist and his GP (Jeremy has been his patient for twenty five years) informed by alerting them to the fact we had started cannabis. Jeremy’s GP was extremely supportive and was encouraged by the benefits of using cannabis for Jeremy. He charted the cannabis medicines and helped advise us in the weaning process of the AED’s. His words at the time “They’ve never worked nor helped let’s try and wean them”

We purchased cannabis online for some months until suddenly one day we were told that “There was no medicine, supply is ceased”
We were horrified, cannabis had become essential in his medicine regime as we weaned the AED’s.
We were gifted some medicine from two dear friends, until we could work out what to do.
There seemed little choice – he couldn’t go back to the AEDs that were so ineffective and toxic to him, there was no other suitable AED’s for the neurologist to prescribe.

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We started cultivating Jeremy’s medicine ourselves.

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We have been open and upfront with Jeremy’s doctors, our then Premier Will Hodgman (at the time of writing we have no Premier), then Minister for Police Rene Hidding and then Minister for Health Michael Ferguson. We also contacted Tasmania Police.

Prior to the Controlled Access Scheme rolling out in September 2017, our leaders seemed to think that “You should be fine, Tasmania Police are not seeking out those who use medicinal cannabis”
Since then, and our failed attempt for Jeremy to be prescribed a cannabinoid medicine we are now being told by our leaders to “Choose a different medicine, and your use of illicit cannabis may compromise his future specialist care”

Our applications (since July 2017) for Jeremy have been met by a panel of experts the Tasmanian Medicines Access and Advisory Committee deciding that Jeremy must try and fail ALL conventional medicines before being eligible. We have also had to deal with his specialist ceasing care mid application process, and waiting for another neurologist to begin work at the hospital.
We were thankful to be assisted by a senior clinician at the Launceston General Hospital whose last correspondence to us was “You get the neurologist to apply and I will smooth the political waters”

At writing of this submission we are yet to decide if we will make another application for Jeremy to the Controlled Access Scheme.

The only thing we are certain of is that we will not expose Jeremy to medicines that were not ever deemed suitable for his neurologist to prescribe, that come with very serious side effects and according to his neurologist highly unlikely to control his refractory epilepsy.

While the risk to cultivate cannabis exposes us to having his medicine confiscated, being charged and limiting his independence out in the community we refuse to torture him with medicines that are ineffective and unsafe.
Cannabis is safe and effective for Jeremy and we will continue to offer him the best quality of life possible. After all he has endured and survived he deserves that much!

the appropriateness of the current regulatory regime through the Therapeutic Goods Administration (TGA) Special Access Scheme (SAS), Authorised Prescriber Scheme and clinical trials;

The current model should only considered appropriate when measured against patient experience.
For us and many Tasmanians the system is failing at the most basic levels. Access to specialists in Tasmania is extremely limited, lengthy wait lists of twelve months or more are common. Patients are being advised that certain out-patient clinics do “not provide that service” when patients seek a cannabinoid prescription.
We are acutely aware that even if there is a treating specialist willing to prescribe, and in some instances TGA approval already gained, the final say falls upon TMAAC.
(b) the suitability of the Pharmaceutical Benefits Scheme for subsidising patient access to medicinal cannabis products;

With limited understanding of this process it is understood that for a medicine to be approved, and then potentially listed on the PBS is a very lengthy process.
Of course, subsidised cannabis and medicinal cannabis products would benefit patients who cannot afford it now with the current pricing.
In Tasmania the medicines are subsidised and with only around a dozen patients approved this could hardly be called a success.

(c) the interaction between state and territory authorities and the Commonwealth, including overlap and variation between state and territory schemes;
Tasmania has not signed up to streamline access to cannabis and medicinal cannabis products.
Our understanding from Jeremy’s neurologist is that he was actually requested to CHANGE his initial prescription to a cheaper product. It is perhaps worth noting here that in comparison to the $60-100 thousand annual price tag for a legal prescription for Jeremy it costs us as little as $20 per week to provide him with home grown organic cannabis and cannabis medicines.
(d) Australia’s regulatory regime in comparison to international best practice models for medicinal cannabis regulation and patient access;

There is no doubt Australia has restricted cannabis and cannabis product access to the point where the current model actually drives patients to the alternative market and self supply.
If the current model was in place to protect patients self evidently it has been an abject failure.
(e) the availability of training for doctors in the current TGA regulatory regime for prescribing medicinal cannabis to their patients;

It does speak volumes that the patient often has more experience and knowledge of cannabis and medicinal cannabis products than their doctor.
Doctors and the other medical professionals need to be trained in the Endogenous Cannabinoid System (ECS). Their lack of knowledge should not be hindering patient access. Cannabis, compared to most medicine is very safe but doctors should be aware and educated in interactions with other prescribed medicines.
As if to signal a complete lack of understanding the TGA has developed clinical guidance documents for a very limited list of medical conditions. For example, guidelines exist for paediatric epilepsy but according to the guidelines there is no evidence to support prescribing to those epilepsy patients over the age of twenty five. Surely the authors understand children with epilepsy more often than not grow up to be adults with epilepsy?

(j) the impacts on the mental and physical wellbeing of those patients struggling to access medicinal cannabis through Australia’s regulatory regime;

When we first learnt about cannabis and went public with our fight for Jeremy we not long after this started Cannabis Awareness Tasmania. It is nothing more than an online social media presence. Tasmania is a small place with Cannabis Awareness Tasmania and the local media coverage fellow Tasmanians quickly learned of us, and what we were fighting for.
For this t.0.r I’d like to focus on these fellow Tasmanians, those who have contacted us in any number of ways over the years.
These Tasmanian patients matter and many of them wouldn’t even be aware of this current inquiry.
Keeping in mind I am not a doctor, pharmacist, social worker, psychologist or what some would consider a ‘professional advocate’ I have no other qualifications than mum and gardener – I’ll do my best to speak for them here;

In many ways the most difficult aspect of what we do is carrying the overwhelming experience of those who come to us for help or advice.
Sometimes when you receive online contact it is difficult to determine who is legitimate and who is not.
But then you just come across the most beautiful, desperately ill people that will do anything for help.
I’d like to make special mention of some of our fellow Tasmanians who have been spectacularly failed by our Government and the current system.

The many people suffering unimaginable chronic pain.
The young children with severely medication resistant epilepsy.
The mums and dads with uncontrolled epilepsy.
The young mum with stage four terminal cancer dumped by her doctor because she was beyond help.
Young Tasmanian patients trying to live well with epilepsy, fibromyalgia, cancer, endometriosis, and arthritis.
The Crohn’s sufferers.
The MS sufferers.
The chronic migraine sufferers.
The people with a myriad of mental health conditions.

The doctors who have somehow managed to get our personal numbers to have their patients call us.
The politicians who send their family, friends and constituents to us.
The complete strangers who come up our driveway. Who knock on our door and shake our hands and then burst into tears begging for help for their suffering and dying loved ones.

These Tasmanians deserve help, they need to be given a voice.
They deserve a doctor that listens, they deserve a panel at the end of that application that appreciates their lived experience and their desire to have a legal cannabis prescription.
They deserve a health minister who listens and is present.
They deserve a police minister who listens and is present.
They deserve a premier, a leader to actually stand up to fight for some of the most vulnerable people who are sick and dying in our state.
IN CONCLUSION

It hasn’t gone unnoticed that patients across Australia are yet again being asked to submit their experience. To this date, any legislation, regulation or policy has overwhelmingly not worked on behalf of the patient.

We call on the Government to appreciate and support the great number of patients who are self supplying their cannabis and medicinal cannabis products.
Of course, we are aware that many Australians do not want to grow their own medicine, and a great number can not self supply.
There is a relatively small number of Australians able to afford cannabis and cannabis products under the current scheme but that is completely overshadowed by the multitudes accessing the alternative market or those who are self supplying.

There is room for a tiered model –

Pharmaceutical grade cannabis and cannabis products.
Herbalist/Dispensary
Self supply.

In order for that to happen, cannabis and medicinal cannabis products must be rescheduled.
The current system is failing patients. Thousands of us are doing what we need to do – because we cannot afford the legal option, or because we cannot access a legal prescription.

Jeremy

With each passing day we are witness to the relentless regression that makes his days and nights intolerable.

There are moments where I hold my breath along with him..and wait for him to breathe.
There are times he cannot keep his feet beneath him, falling.
There are times when the seizures threaten his life.

Sometimes when I look at him, into his eyes, I see the little boy who loved trains, riding his bike, who was smart, happy…

Healthy.

And then the reality of his days and nights come crashing in – the injuries, the risk, the seizures..

The fear.

He is twenty seven.

He has two younger bothers who ride a roller coaster of caring, loving their bother and trying to see him through the latest emergency, the latest seizure. They also hold my hand, help me make impossible decisions in love, in fear.

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His step dad, since he was three years old, has been completely and totally, Dad. He loves him unconditionally has spent long nights in tears with me, consoling me, trying to strengthen me and grieving himself.

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Our friends and family, care and pray for him and us. We are surrounded by so many people who love him, and us.

I am sure there are many of us who lay awake at night hoping he will be here tomorrow.

I don’t know how to express the absolute fear I have of the day when he is no longer here.
How will it happen.
Will he suffer.
What should we do.

What should I do?

 

He is so tired. I want him to grow old, healthy and happy.

We have grieved for what he has lost since he was six years old. But there has been so much joy. So much pride.

So much love.

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We just have to be strong, he depends on us. Above all else, he is loved.