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

“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.

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.