My heart is pounding out of my chest as we 3 blink down fat tears into Eddy’s 5th seizure tonight. He mewls weakly, floppy-limbed, white-lipped and slumps into my arms. I can still hear the echoes of the deep aching sobs he cried before bed, terrified of the seizures he knew he would have tonight. The heart-wrenching grief that he would inevitably be woken by pain and suffocation, that he might not wake up tomorrow. If you heard those sobs, you would never hear another child squeal without a deathly reminder of our haunting maybes.
Maybe his prescribed CBD medicine will arrive tomorrow, released from Medsafe clearance.
But probably not.
They told me as such themselves.
Maybe the next one will be the one. The one that chokes him silently in the night and we never get to spend another birthday with this special little boy. The one that is stealing all of our tomorrows and every moment of joy until it comes.
Because how can you truly relax knowing any seizure could be the big one? I can’t. My neck and back ache with a searing pain between the blades of living in constant fear. When I lay beside Eddy with his fragility so close, the intrusive thoughts come thick and fast.
He’s going to die. Don’t relax, don’t sleep. The second you do will be the second a silent and deadly seizure comes for him. Never relax. Always be vigilant. Prompt him to breathe if it’s been too long between breaths. Every twitch, every movement a possibly seizure baiting it’s prey. My stomach is churning, the acid in my stomach burning with anxiety.
Maybe that was the last one for tonight and I can get some work done. But probably not. My brain is shot. It’s riddled with worry. Every night is worse than the last. Every seizure is worse than the previous. Old friend insomnia buries his fangs deep into my neck and draws hungrily on the early morning hours.
Between seizures 1 turns to 2 then it’s 3 and I still haven’t tidied the kitchen for breakfast in a few hours. I promised Eddy I would take him and his brother Harry to Butterfly Creek in the morning and I realise we forgot to do the grocery shop for the 5th night in a row and I don’t have anything to pack in his lunchbox.
This is our reality. As parents, staying on top of the basics when you live in constant panic, is nigh on impossible. It’s not just the sleep deprivation – we have a 1 year old for that. It is life interrupted by potential death creeping at the seams.
It’s dinner burnt on the element because we both went running when we heard screams. It’s empty lunchboxes because we forgot to shop again. For the 5th week in a row. It’s clean school uniforms sitting unworn for weeks and weeks on end because we simply can’t risk a potential infection right now in case they exacerbate his seizures beyond repair, without remedy.
It’s cancelled family gatherings and no birthday party for Eddy. This is our life without his legally prescribed CBD. Imported because 3 years after speaking in parliament, we still have no domestic market and a paltry 2 Canadian CBD products here at $200 per bottle that are not fit for purpose. Not for us. Not for many.
Eddy’s CBD imported and controlled because despite public perception CBD is not a controlled drug, it actually is. There is a niggly little 2% of other cannabinoids threshold that keeps it neatly tucked inside the Misuse of Drugs Act (1975) alongside all other the criminal substances for abuse. That is despite the WHO stating there is no scope for abuse with CBD, it is still being treated like a criminal drug here in NZ.
This 2% threshold has completely cut my son off from the only medicine that has ever truly and safely worked for him and for all of us, with absolutely no thought given to the ramifications on patient safety or the definition of patient access. In case you were wondering, it is completely free of THC, THCa, and THCV at non detectable levels.
Every developed country in the OECD has strict guidelines for recommended drug treatment pathways for paediatric epilepsy types – every single one stresses in great detail the importance on continuity, especially in more severe epilepsies, like Eddy’s. Any changes to medication should be slow, gradual and under the supervision of a medical professional.
When the Medicinal Cannabis Amendment Act failed to make provisions for the health and safety of patients, it interrupted established prescribed treatment for thousands of patients with dire consequences. It became an entirely new barrier to access in and of itself. It ceased supply. It did so silently and secretly under the guise of process with letters missing in the mail and absolutely no communication to the overseeing prescriber whatsoever.
Imports of medicines over $1000 are required to pass through a Client Codes system at Customs to pay uncollected GST – another layer of obfuscating red tape and more time to pass. Medicine should not be treated as a luxury item. It should be highlighted with urgency – no one would go the expense and logistical nightmare that is importing in a post-COVID climate if a local substitute were available.
There are no local substitutes. There is no domestic supply at all. There are no testing facilities available to manufacturers to get their products up to a ridiculous standard that no-one asked for; certainly not patients. I was there at every public consultation and I remember what a farce the whole thing was then. There was no patient consultation at all.
During the drafting of the Bill and various readings, MOH appointed a foreigner who broke our drug laws with intent to represent NZ patients without asking us who we thought best. This exemplifies the MOH stance: medicinal cannabis patients are just cannabis criminals dressed up like sick people. A position reiterated by Andrew Little when he said the New Zealand public voted against greater leniency in the referendum. They did not. The referendum was about recreational use – not medicinal. No one said punish the patients.
The line between recreational and medicinal use of cannabis must be drawn if patients are to be met with safety and accessibility. The Medicinal Cannabis Advisory Group made notes to the Secretariat to seek consultation feedback on barriers to address the equity of access – especially for high-risk populations: Maori, Pacific Island and low socio-economic groups. Concerns were also voiced by advisory group members that any extra regulatory compliance would necessarily be passed on to the consumer. In absence of a public funding model, why would any NZ patient want to pay more than the international or black market price?
Patients have been stripped of previously locally available medicines and denied access to offshore alternatives. The domestic market does not exist. It is a myth. Furthermore, legal imports are being treated as luxury imports with lackadaisical delivery and unduly processes that do not reflect the critical nature of timely medicine delivery. Worse, our Minister hears our cry for help and shuns our advances, ignores our pain and calls us criminal in public.
Our only crime is daring to hope for access and safety. We will not rest until we have it.
We can’t. Our boy might die tonight.
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.