GUEST BLOG: Katy Thomas – I have less than a weeks medicinal cannabis left, I fear my son will die

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“I’m worried about my seizures” Eddy’s big blue eyes turn to me, red from crying.” I don’t want to die.” His bottom lip pulls his chin to his chest where hiccups of fear escape.  The tears come frequently now.  Waves of sadness wash over us throughout the day, sucking the joy from all our favourite things to do. “I know buddy” he parrots back to me before I can even open my mouth. He pats his delicate wee hand over mine to comfort me in the midst of his own distress.

He knows too much.

In the corner of Eddy’s bedroom, our friend Stephen’s face crumples listening to Ed speak. He puts down his camera to wipe away his tears.  Behind the microphone of Pat Brittenden’s studio, the former Newstalk ZB host removes his glasses to wipe his eyes in the middle of our interview.  At school another Room 1 Mum stops me in the school hall to say me her son cried when saw Eddy on the news and bursts out crying herself.  The pain we share for Eddy is so raw.  It sits just below the surface of our everyday interactions.

Nothing is normal any more.  We have less than a week of CBD left now.  Each day is measured with danger.

In the middle of the night a panicked Mum messages me from the Emergency Room of Starship.  Her little girl is seizing uncontrollably being pumped full of Midazolam and Fentanyl and Epilim and Keppra and Clobazam before her eyes as her daughter’s oxygen plummets below 50 and nothing is working.  She has tried and failed to access CBD previously through her specialist and she is desperate for someone to consider charting it for her in ED in her hour of need.  My heart breaks into a million pieces for her.  I already know she won’t access it tonight or at all during her stay in Starship.

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Prescriber reluctance is second only to price in preventing patient access.

Whether led or not by NZMA President Braddock who made, then withdrew comments in support of the no vote in last year’s cannabis referendum; GP reluctance to prescribe medicinal cannabis for their patients is underpinned by some criminal negligence from the Ministry of Health.  The funded prescriber resource currently being developed by BPAC should have been rolled out years ago when fundamental information gaps were highlighted by the Medicinal Cannabis Advisory Group.  From first meeting to last, the Secretariat was meant to action both dissemination of information to prescribers and increase avenues to education in 2019.  The glaring lack of knowledge for dosing and titration per condition is evident at the pointy end of the patient experience and the start of their learning journey.  Baby doctors need endocannabinoid system and medicinal cannabis training at med school too.  

Making me talk to registrars on the ward when we are is not good enough.

That morning, the CEO of an NZ Medicinal Cannabis company is on the phone, “The Ministry of Health has never been slower (at approving License to Manufacture Medicine). At this rate it will be another 5-10years before you get your local market.”  Another, Helius, with the first-mover advantage has been caught up in an ongoing 12 months process to gain GMP certification and associated License to Manufacture that no one has gained yet.  “The GMP, the testing, and stability requirements have been extremely onerous” admits Eqalis CEO Mitch Cuevas via email.  “We’ve spent more than $20M so far” Manu Caddie of Rua tells me on the subject of affordability.  “Ongoing costs of production are high to maintain GMP certification”

Which begs the question: when 90% of the world’s CBD is not manufactured to pharmaceutical GMP, and GPP products from the US or Canada cost 15% of what we pay here, exactly why are we pursuing GMP still?  

The International Journal of Drug Policy compared the accessibility of CBD and regulatory frameworks of 9 countries including USA, Canada, Germany, Ireland, United Kingdom, Switzerland, Japan, Australia, and New Zealand as of May 2020 noting only New Zealand and Australia as exceptions requiring a clinician prescription to access CBD.  Of course, this is no longer relevant to Australia who have since approved low-cost, over the counter access in a landmark deal with Cannatrek and the Discount Chemist Warehouse.  Which leaves New Zealand alone as the only barrier to access to CBD. 

Don’t be foolish enough to think that a prescription will help you either.  We aren’t alone.  You don’t have to be disabled from birth to be disenfranchised by our government’s approach to medicinal cannabis.   If you want your prescription funded by WINZ or ACC you will need to take the case to court and have it ordered by a Judge.   An OIA on the ACC website points to an embarrassment of claims upheld by ACC in the past 5 years.  Less than 4 in the years leading up the Medicinal Cannabis Amendment, 5 in 2018, climbing to 6 in 2019 and a whopping 8 last year.  No wonder patients are complaining the only affordable options available to them for relief of their symptoms as a result of an accident is the black market.

It’s not that I want to pour $1000’s and $1000’s every month into the UK economy, to fill Eddy’s prescription, I don’t have a choice.  There is no local alternative available here nor is there one on the horizon.  For certification and licencing, every product variant is required to provide 6 months of shelf-life stability data – which costs $¼Mill per product. No New Zealand company is going to develop a product to meet Eddy’s needs at that price point. Instead, what we will see is multiple versions of the same product under different brands.  All grossly overpriced compared to our Aussie neighbours.  The culpably careless mishandling of CBD as a medicine shows it must be taken out of the Misuse of Drugs Act, out of the Medicines Act and declassified immediately if it is ever to be made widely available at a low cost.

Our Doctor writes to Medsafe highlighting the urgency of Eddy’s case and orders in bulk every last bottle in stock of what we need as Medleaf step in to assist with import permits to help navigate the most unnecessarily inaccessible system in the world.  Collectively we bite our nails to the quick because Eddy has only days left to go on the CBD he has left and Customs might destroy Eddy’s last hope of survival.

On a diminishing dose of CBD, only days left to go, he is scared of dying. And I’m scared too.

Katy Thomas is a TV Presenter, business owner and patient advocate.  She has a petition at her blog site wellfitmum.com and you can learn more about her journey at Instagram.com/iamkatythomas   After Eddy was refused ketogenic diet support for his epilepsy through ADHB, she started ketogenic food company Keto Happy Co. to improve patient access and support.  When she isn’t working on that she is Mum to Eddy and Harry.

7 COMMENTS

  1. “There are no incurable diseases — only the lack of will. There are no worthless herbs — only the lack of knowledge.”

    Avicenna

  2. I wonder also whether trying Psilocybin AKA ‘Magic’ mushrooms might help. I only suggest that because they’re harmless yet one can be handed a 20 year prison sentence for trafficking or selling. You’ll find them growing literally everywhere but specifically at the beginning of autumn.
    I have a friend who’s bedevilled by cluster migraines. Nothing conventional works. He was working in London for a period of time and even the best minds on Harley Street failed to administer a cure.
    This is a list of the medications various doctors prescribed him.
    Lithium, high dose, blood tests needed every 2 week
    Methysergide, high dose
    Verapamil, high doses, ECG needed every 2 weeks
    Steroids, high dose
    Amitriptyline
    Imigran Injections and nasal spray
    Oxygen high flow.
    Result? None of the above drugs worked well enough to give my friend a reasonable quality of life during his episodes and almost all of the above drugs had terrible side effects. And lets not forget that he lived in fear of episodes between them.
    One micro dose of naturally occurring Psilocybin in a raw mushroom state as a preemptive administration stopped the onset of his cluster migraines aka suicide headaches, in their tracks for a year. He never took more than was necessary and he’d never go to a point where he hallucinated. He told me that he’d discovered that too little was as ineffective as was too much. The skill was in taking exactly the right amount. Not too little, not too much.
    Unlike myself. A little can be quite nice while far too much can be wonderful. ( Police? Still your beating little hearts? This story is more than 30 years old. )
    My experience with mushrooms was more than 30 years ago when I was young and, I’m happy to say, easily influenced.
    Friends of mine found the Rolls Royce of Magic Mushrooms down by a beach where I had a house.
    Friend A went off to stand in the middle of the road and practice his flaming wands act ( He was an actual performer and he put on a great show. ) while friend B became transfixed by the unfolding drama in the wood grain of my lounge floor claiming he could see a horse drawn wagon being chased by Native American Indians while I went off for a pee but I couldn’t catch the toilet because it was floating about near the ceiling while the walls were bowing in and out. Sitting while peeing while unraveling the toilet paper was a fascinating experience…
    We had a fucking ball. We laughed until our sides felt like they were about to split, we ran about outside in the dark communing nature only to discover when we woke up at midday that our beds were full of mud, leaves and twigs.
    No hangover. No psychosis. One very memorable night.
    20 years in prison.
    We could’ve got legally drunk. We might’ve had a serious fist fight between three mates then got lost in the bush to die of exposure or drowned in the surf. We could have driven to town for more booze and crashed killing us and others.
    We could have lost an entire day waiting for the hangover to leave our damaged organs and brains…
    Can buy lethal amounts of alcohol in supermarkets beside the cheeses and salami’s.
    Do you ever wonder why we acquiesce to living in a ghastly reality foisted on us by dangerously insane fools who’s life’s passion is to collect the money of others to secret away simply to say they have quite a lot of it? Is that madness? Or am I still sitting on the toilet?
    andy little? How much do we pay you? $200K plus? You need to get out more son.

    • The Balinese love their mushies and I would hazard that they have great overall mental health as a people. Very high levels of joy, strong families, artistic and musical talents and a deep appreciation of the hidden worlds beyond the flesh.
      One problem with shrooms though is seeing beyond and then being forced to endure the mundane masses can be frustrating.
      However in Bali everyone else gets it too so you all resonate together.

      Right on Man.

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