GUEST BLOG: Katy Thomas – My Son’s medical cannabis was seized by Customs AGAIN!

“Mummmyyyyy!!!!” Eddy’s excited little face lights up as he runs to me at the school gates.  “We’ve missed seeing him here these past few months” one of other mother’s whispers over his head, before I sweep him up into a cuddle. “Mummy!!!” he squeals again before he dissolves in a puddle of giggles, resurfacing only to blurt “I’m so excited!” He bursts out laughing, rattling off stories of the adventures in Room 1 as we head to the car.

My body is walking but my head lingers at the doctor’s clinic, still spinning from the failed medicine collect just moments before. On my way to school, I stopped into Eddy’s GP to collect his imported CBD medication.  A clear bag is heading out of the nurses station with just over a dozen little bottles and at a glance I can see it isn’t enough.  

“But where is the rest?  Where are the black bottles? Was there a letter with it? Anything?” I’m trying to sound calm and reasonable but the anxiety climbs out of my mouth all shrill and shaky.  My eyes search the nurses and reception and I already know the answer is no and nothing.

More than half of Eddy’s medicine is missing.  

What’s left is little more than enough to last 2 weeks.   

While I’m staring at my incomplete delivery in disbelief, UPS email to say that Customs want $302.64 transferred to their bank account immediately for “charges and clearance fees” for the CBD medicine they just seized and intend to destroy as a “controlled drug.” I’m using parentheses because it’s not like hemp grows up out of the ground a controlled drug.  The CBD we import from the UK is classified as a novel food over there FFS.  

The “must not exceed 2% of CBD” limit of specified substances that Customs uphold from the Misuse of Drugs Act 1975 to prevent access to Eddy’s life-saving medicine is at best a discriminatory tool to narrow the scope of products available to patients.  At worst, it is a blatant copy and paste from the Australian TGA with zero thought to local ramifications.  Middle ground points to the mulish rejection of expert advice in the 2018 Mental Health inquiry that clearly states  “It’s not a war on drugs, it’s a war on sick people and it needs to stop.”

A more cynical mother might suggest something more sinister.  That balancing the health budget is incompatible with the financial burden of chronic illness and disability.  That the reason there was nothing for the disability sector in the recent budget is the same reason we don’t have an Accessibility Law – our government aren’t interested in the future potential of the disabled, infirm or chronically ill.  That’s why leaked documents show they deliberately ruled us out both then and now.

We are a fiscal liability and of no interest bearing until we cease to be so.  

Or cease to be.

The scope of palliation in the Medicinal Cannabis Scheme, currently under review and under threat of removal, is so uncompassionate precisely because they want us to die.  They want our silence paid in blood.  You may have your medicine, but only if you promise to die.  Where we can amortise your future expenditure in a straight line over the foreseeable future, please have a doctor sign there your death warrant.  Only then may you have the medicine of your choice at a price you can afford.  Literally, the very least we could do.

Until then, you the weak and the vulnerable, you with the shorter life expectancy and poorer quality of life outcomes, limited learning and reduced earning potential – you must pay.  You must pay for specialist clinic appointments for new prescription attempts to navigate our disabling laws ($100 + $500 for Eddy this month alone), you must pay for medicine you will wait for and never receive ($1200 + $1434 + $1434 since April), you must pay for Customs to destroy what you so desperately need ($435.54 + $302.64 this week)

And most importantly, you must pay in blood, sweat and tears little Eddy.  You should cry to sleep every night and scream in pain through the darkness.  You will pay in brain damage and life-threatening seizures sweet child because that is what is right and just.  Because percentages and paper trails matter more than your mortality baby boy.  It is important that the cut on your eye match the bruise on your legs because we really need you to feel it in your bones that your life has no worth to those of us in power.  

Should you ever forget, we will continue to make your existence as painful as possible until we hasten to you a premature death by our obstinate inaction and delayed deliverables.  We will make every minute an hour, each day last for weeks and turn months into years before we will ever consider offering you some modicum of relief.  Did you see what we did with that 100 day promise? 1100 days late and we’re yet to be held to account.  Did you see how we martyred Alex Renton? “Too little, too late.”  That’s how we intend to kill you too.

A heavily redacted OIA shows that briefings of 2017 David Clark’s Ministry of Health main policy priority was equitable access to medicinal cannabis products.  The Minister then was “not in favour of a scheme that would provide easier access only to those who can pay”.  Yet the current scheme goes even further than that to create insurmountable obstacles for those willing to pay.  It bleeds us dry and destroys the prescribed medication we were easily able to obtain during his term.  There was talk of alternative funding sources and subsidised products – why have these conversations since been silenced?

The last NZ Health Survey Data to capture self-reported cannabis use (11%) for medicinal reasons (42% of 11%)  found some 234,000 New Zealand medicinal cannabis patients in 2012/213.  Compare that number without adjusting for population size or increase in cannabis use (15%) in 2019/2020 and we have a present-day medicinal cannabis crisis where some paltry 2-3000 patients are being prescribed for and treated with medicinal cannabis in New Zealand.  Less than 1 % of the patient population has access to medicinal cannabis.  With CBD prices per bottle ranging between $178-433, Sativex closer to $950 I doubt any of them find it affordable.

If this blog feels repetitive, that’s because it is.  I’ve been saying the same thing for years now.  It feels like the only time we were heard was when Eddy and I spoke to Health Select Committee in parliament 4 years ago.  It’s easy to ignore the sick little kiddies and sad-faced Mummies until we’re in front on you are you realise we are not your account in deficit, we are the ones you can save.  We are the low hanging fruit. The overnight miracle and the living testament of your good work.  The legacy for which you will be remembered. 

Or judged.

I feel nausea in the pit of despair that has made it’s home in my stomach.  My skin crawls with fear about the what ifs waiting for us on the other side of a fortnight and I want to cry and I want scream but I don’t. I go to the car and count and recount the bottles I do have.  The ones Medsafe kindly processed and delivered in efficient manner.  But not the ones I want.  Not the ones we need.  I swallow down the lump in my throat and I drive home from school to with a boy who has only 2 weeks left to go on his prescription.

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.