Eddy collapses on the floor of the emergency department screaming. “Neurology are expecting us!” I call to the charge nurse as Ed claws at my face. He pulls fistfuls of hair off my head as I recite his name, date of birth, NHI and presenting symptoms – “Uncontrolled seizures” I yell through the Perspex window and over Eddy shrieking expletives. The other parents look on with sympathy at the ensuing mayhem, pulling their children closer. Just in case whatever he has might be catching.
He doesn’t want to be here. Neither do I.
Would you like a wheelchair? Nope! I answer brusquely as I sweep him up into my arms. He will just throw himself out and do more damage. “It’s easier like this.” I say marching ahead to the ward to have him sedated. The nurse nods, takes our bags and lets me stride away, sweating profusely under the weight of our winter weather jackets. It is pouring outside like the rivers of fury raining down hot on my heart.
We don’t deserve to be here.
“Relax sweetheart” I say discarding the used syringe and stroking his hair. Eddy’s eyes roll back in his head. Then his oxygen plummets. On the way to neurophysiology we stop to get him a tank of oxygen. His eyes fly open wide with alarm when the 3rd lead is attached to the back of his skull. “It’s ok baby, I’m always here” I smile down on him. Standing until the tangle of wires are taped to his head and fed into the machine that will monitor his brain activity for the next 48hs.
That is still recording him now as I write this beside him.
He’s agitated. Ripping the pulse oximeter off, alternating between sitting up and rocking or pulling the ninja cap of wires off his head. It’s 2.45am and I don’t remember the last time I went to bed on a Tuesday and woke up on Wednesday. Between catching him and consoling him, holding him and writing about him to anyone who might care, who might be able to help it’s been months and months of all-nighters. The only difference is now we are back in Starship.
I thought we had done our time as in-patients long ago.
I’m pouring over certificates of analysis checking and rechecking the maths on our mega import of 36 bottles of CBD finally on it’s way here. It’s ludicrous to think after all these years, we simply don’t have anything even remotely biosimilar here in NZ. Lengthy discussions with importers and clinicians this week has us all arrive at the same conclusion. If we can’t get Eddy’s UK CBD in, the next step to make something to mimic the missing CBN is mixing THC and terpenes together. It is pure madness that this is the next logical step for our government. Remove our access to a product with no detectable THC and force us to consider THC instead when all we want is a CBD product with less than 0.15% CBN!
FYI anyone entering NZ is allowed 1 month of controlled drugs.
But any patient unfortunate enough to be living here needs much more than a simple prescription and original packaging. For resident citizens it requires a Special Access Application, to be completed by a specialist. Good luck finding one who will do that and affording the fees for a private consult. Beyond the Ministry approval of that application, you will also need an import license. One per prescribed product, per patient, per application. God forbid you be unlucky enough to fall outside the scope of monotherapy – multiply the price tag by how many meds you require and again by 5 to compare our prices with those of overseas patients.
Sometimes I lose track of where access ends and affordability starts in NZ.
Poor Eddy doesn’t know our government doubled down on press secretaries instead of investing in policy writers. That the most restrictive regulatory environment in the world (ours) not only prevents local companies from bringing products to market, it is destroys all hope of providing clinicians that which they are most hungry for: data. Medicinal cannabis products are proving exorbitant to manufacture and import under the current scheme, which minimises the potential for clinical trials. Trials offer patients the opportunity to explore medicinal cannabis at low or no cost. Trials cost mega money and local medicinal cannabis companies are bleeding capital until they can recoup their investment in sales.
Sales are that are dependent on prescriber confidence.
This vicious chicken egg scenario has us looping helplessly back to the beginning of Eddy’s epilepsy journey without government intervention. Now more than ever, we need help from the Ministry of Health. I send one last email to Ministers Little and Whaitiri to highlight the importance of this import. It is our last hope.
Hope is dying.
And us with it.
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.
The whole sorry story of medical cannabis is one that can be repeated on so many fronts in dealing with this Labour Government. It shows what can happen when one party gets total power and are not held to account for their deeds.
The vaccine role out, gangs, hospital workers, roading and new bridges, school repair . prison reform, climate reform the list goes on .Once questions get asked the shutters go up and the Minister runs for cover . With no real opposition I fear for this country and it’s future
Please sort this NZ Government
Its just heart breaking Katy, I do hope things change for the better for Eddy and everyone in NZ who has disability.
Over the last few years, seeing properly the uncaring way government treats its disabled population has been a huge wake up call for me.
Against cruel indifferent bureaucratic stupidity the very gods themselves contend in vain.
What a disgusting disgrace it makes me SICK!! Where is this LINO government the same old just adjust the settings BS but won’t get off their overpadded arses to get this sorted.
You must read this if you haven’t already @ Katy Thomas
The Guardian/Mike Tyson
‘I’m a lighter me’: Can Mike Tyson and psychedelics help boxers with brain trauma?
https://www.theguardian.com/sport/2021/jun/14/psychedelics-boxing-brain-trauma-mike-tyson-therapeutic-use
We are still fighting Richard Nixon’s long lost war on drugs. Commenced largely as public relations exercise.
One of the most senseless political policies of the twentieth century.
20 bloody years I have been fighting those pricks to get cannabis legal, everytime a different excuse, then we had to deal with Dunne with his standard form letter of why we must all continue taking crap pharma drugs that dont work. We just manage to kick that weasel out and he jumps into bed with one of the medicinal cannabis corporations as their chairperson of the advisory board, in other words guiding the political process down the path of his chooising and here we are with the MoH demanding some GMP process for a harmless product anybody can grow and produce but somehow our system decided it has to be a restricted medicine to protect pharma BS interests.
They say we’re one of the least corrupt countries in the world but when you put this whole cannabis issue under a microscope, damn our govt isnt any better than a banana republic!
We’re dealing with narcissist politicians well and truly paid off.
It doesnt matter what evidence you put in front of these people, its always going to be a no.
So, how do we just convince the people to stop applying cannabis laws because I have a feeling they wanted this law changed too, just just have criminals running our govt and their hands are tied.
If you can, just bloody do it yourselves, ignore their bloody rules, their rules of selfishness, hate and down right cruelty and its time some part of officialdom said enough is enough!
Now if anyone asked me more than 20 years ago would I be happy with legalising cannabis I would have said an adamant NO.
But times have changed and my thinking along with it. In January 2000 my now late mum was diagnosed with an inoperable brain tumour. She was given 2 weeks to a few short months to live.
But to cut a long story short she recovered from the ‘brain tumour’ but there was ongoing brain damage. She had the mind of a child almost until her passing 8 years later.
If we had access to cannabis whilst she was with us I am sure my father and I would have had no hesitation of slipping it into her food in order to help her. We only wanted what was best of for mum and it could have helped her mind-wise.
Instead every man-made medicine she was given only made her much worse than ever before. For both dad and I it was mentally, physically and emotionally exhausting. Despite having two brothers here in NZ dad and I were the main care-givers. We were her caregivers 24/7.
To me the Great Spirit put this herb that is cannabis on the planet for a reason. And whilst there are those in society that abuse it there are many who would appreciate easier access to it.
And so last year at the general election and the referendum on legalising cannabis I voted in favour of it. I am sure when it is taken in moderation it has more benefits than the man-made rubbish that exists today.
But then lets face it. The pharmaceutical companies that make millions upon millions of dollars by dolling out man-made medicines to gullible people are scared that cannabis may well result in them losing their profits. And so it’s a MONEY MATTER to them and not a HUMANITY MATTER.
Someday soon cannabis needs to be legalised. Who knows it could create an ideal industry for NZ in these no Post-COVID(that is still with us)times.
The simplest of tasks seem to be too complicated or too hard for this government. The only action taken with health provision has been to remove democratic accountability. all to save money. The public are willing them and cheering them on, but they seem to be afraid to take the first steps to do anything meaningful. I see 6 wasted years coming up and then the other lot get back in to continue the damage. I am hoping that act like Mike King’s handing back of his honour might have some effect on mental health and the other issues such as medical cannabis we need urgent action on. Mainstream media seem to be missing in action on this as well.
I’ve suspected for quite some time, that our AO/NZ isn’t actually ours and when something doesn’t make sense, money’s always behind any anomaly.
You’ve got to read this. I mean, you really really have to read this. It’s no longer a mystery to me as to why we drag our heels with regard to street drug policy. It’s because the conservative american politician won’t let us.
We’ve been scammed. Look at the freak show behind thiels bid for citizenship. From bill english to donald trump.
rnz
pete thiel.
Ben Wallace-Wells on the politics of Peter Thiel
“New Zealand citizen and tech billionaire Peter Thiel is known as an early investor in companies such as Facebook and founder of PayPal.
Now he’s investing in politics, pouring millions into Senate campaigns of two long-time friends, who, like Thiel, hold populist-conservative views. ”
https://www.rnz.co.nz/national/programmes/afternoons/audio/2018799668/ben-wallace-wells-on-the-politics-of-peter-thiel
But before we go, lets remember who brokered theils deals. A fucking traitor farmer. Who else?
Warning. Gag worthy.
https://www.nzherald.co.nz/indepth/national/how-peter-thiel-got-new-zealand-citizenship/
And yet we get this madness outside Sky City. “”My guess is it would be some sort of synthetic cannabanoid.”” For starters, these chemical highs ceased to be analogs of Cannabis sometime ago, in fact they were never close. Usually some form of toxic non-pharacutical, it always turns out. Secondly, in all the time we had the legalisation campaign, there was not one report of such an incident involving actual Cannabis. Why not? Because Cannabis is widely used, but has a low or non-exisitant overdose potential. To solve the problem in this article get the ESR (or whatever the Govt. research organisation is called now, if we havent sold it off or closed it down) to do an extraction from the huge mountain of siezed cannabis (they do it when they analyze it for prosecutionss anyway). It doesnt take long and they can standardise doseage easily. Make a range of extracts available for people caught up in this Cathkaesque nightmare. Or make it synthetically, it is about 12 -15 processing steps. We need more of our cabinet ministers to be intelectually proactive and kick some butt with their portfolios.
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