GUEST BLOG: Katy Thomas – The medicinal cannabis trauma isn’t over, we’ve just stopped haemorrhaging for now

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Receipt of Eddy’s months-overdue prescribed medicinal cannabidiol (CBD) is not the deliverance you might expect, it is merely a stay of execution.  By no means the pardon to live freely for our 7yo blue eyed wonder. The trauma isn’t over, we’ve just stopped haemorrhaging for now.  Not the cash though.  The bill for 6 months reprieve is $11,000

“Imported products are expensive and patients are going to the black market to find their medicine”  said Assoc Professor Ali Seyfuddin, AUT Drug Delivery Research Group on Fair Go last night. He says the government needs more flexible regulations to allow New Zealand companies to bring products to market and help patients access more affordable medicine.  

The show highlighted how vulnerable kiwis are being targeted online by scams purporting to sell CBD oil that rarely contains the dose described on the label. Our government has left medically vulnerable kiwis open to exploitation by not providing an accessible medicinal cannabis scheme.  It’s been 4 years.  Patients can’t and wont wait for further regression.

As soon as Eddy’s medical cannabis arrived the long-held oppressive weight of stress and perpetual sleep deprivation delivered it’s final sucker-punch to me – I went straight into moderate to severe anaphylaxis for two weeks. As I write, I’m on a high dose of prednisone and antihistamines to keep the epi-pen at arm’s length.  Add caregiver stress to the burden primary care shoulders for government ineptitude on medicinal cannabis delivery.

On Sunday night we appeared on 1News to discuss the medicinal cannabis crisis our government created.  Created and denied. When asked; “Has the Government made a mess of the medical cannabis market?”  Jacinda Ardern answered (laughing)  “No. Ultimately, we want New Zealanders to access safe products to manage their medical need.  If that is not what people are experiencing, then we will keep looking at the system we have created.”

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The bald-faced “No.” didn’t need to be paired with a smirk of derision but it was.  A laugh in the face of all the pain and suffering their systems have visited upon us.  A jeer at the jail-sentences and misery 4 years of incompetence has brought to bear on the ¼ million of New Zealand patients who have not been able to access affordable cannabis medicine.

New Zealand medicinal cannabis companies tell me there are 2000 repeat prescriptions per month for medical cannabis.  2012 Ministry of Health Survey data showed 42% of 11% of cannabis consumption was for medical purposes.  Without adjusting for population growth, that means less than 1% of the patient population is accessing legal medicinal cannabis.  

In other words, our Government is happy with more than 99% of kiwi patients using illegal, untested, unsafe cannabis. 

A paper put forth by ESR after testing 100 samples of Green Fairy “CBD” oil revealed the contents to be highly variable and rarely high in CBD as claimed.  One concerned grandfather was shocked to discover the “CBD” oil his grandson had been taking for his paediatric epilepsy was high in THC, containing very little CBD at all.  

Zero fucks given for patient safety.

We checked out of Starship for 48hs of video EEG monitoring where Eddy’s Neurologist and Psychiatrist observed a number of disturbing behaviours – not the least of which repeated self-harm and violent episodes.  It is crucial to distinguish on this point that these behaviours have now dissipated with his prescribed CBD we import from the UK.  The only 2 approved CBD products available here didn’t do that.  All CBD is not created equal.  

“It’s not a one-size fits all product” says leader of Auckland Patient Group, Pearl Chomburg Which is why a free market is so crucial.  Patients must have options.

In the first 3 months of 2021, 121 consignments were interrupted at the border by Customs.  Last year more than 200 consignments of medicinal cannabis were destroyed at the border.  How safe is it to intercept medicine New Zealand patients need to treat for their conditions?  How safe is it to override prescribing medical professionals?  How safe is it to play God with our patience and our patient’s lives?

Let’s call it for what it is, what Professor Michael Baker did in the NZ Herald last week – our government’s inaccessible and unaffordable medicinal cannabis scheme is a war on sick people and it has to stop. 

 

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.

6 COMMENTS

  1. While totally disagreeing with many government policy I have commended Jacinda in her great approach in dealing with suffering however watching her on Sunday smiling as she lied about her government’s approach to CBD I was appalled.
    I would be interested if a true Labour supporter can explain why she deserves their continued support . I can imaging the noise coming from them if they were the Opposition.

  2. While totally disagreeing with many government policy I have commended Jacinda in her great approach in dealing with suffering however watching her on Sunday smiling as she lied about her government’s approach to CBD I was appalled.
    I would be interested if a true Labour supporter can explain why she deserves their continued support . I can imaging the noise coming from them if they were the Opposition.

  3. I two noticed the smirk and the opportunity to drop in the prohibitionists ‘waiting for something safer’ no one has ever died from cannabis or maybe there was one that hit the headlines but still nothing to compare with the 1000s that die from big pharma.
    A few months ago paracetamol was shown to be ineffective for pain, its still promoted and can be deadly, so much for caring about safety.
    The health department still promotes the deadly and addictive nicotine, but we have to offer an alternative to get addicts of it they say. Why not just ban it , make it illegal, cannabis was legal till they got sucked in by fake news and banned it .
    No other issue demonstrates the corruption of the government so clearly.
    Cannabis offers a solution to many of the problems that face us these days, but no money in it for the old boys that pull the strings and who benefit from the outdated and unsustainable industries that choke the planet.

  4. AO/NZ’s less a team of 5 million and more like a dysfunctional family of 5 million who’re bullied and intimidated into compliance at the behest of our hyper rich, right wing, God Walloping American Deep State masters.
    The aforementioned have given up on the USA because the USA’s fucked and they know that because they fucked it so now they’re looking further afield to settle in. Think Tick under your skin.
    Do any of you really truly believe a market garden that can feed forty million with only five million people, of which only 52 thousand people make and supply that food for the forty million are going to retain autonomy of their country? Banning cannabis in AO/NZ reeks of crusty old white yank right wing christians.
    You mention ‘Black Market’ for pot. The real black market is pharmac. A friend of mine’s mother has polymyalgia which is inflammatory condition of the nerves. Absolutely treatable with cannabis which is illegal but she was prescribed prednisone, a drug that slowly tortures the patient before a long and lingering death.
    We AO/NZ’ers need a revolution. I mean, a real and actual revolution. The bastards who drive up to what must be the ugliest government building on earth wearing their high fashion with organic foods digesting in their fat guts’ don’t give a fuck about you or me. They take our money after they convince themselves they deserve it and that’s about it?
    A slight aside here. What is it that our politicians actually do? What. Do. They. Do? Do you know? Because I don’t. What pencils are pushed? What paper’s shuffled? Do they make calls to world leaders about world affairs? Do they have deep and solemn meetings about this and fucking that?
    Are they doing their open minded, informed, well intentioned best for us? FOR US! ?
    I think the answer’s no. So then? Why are they there still? High school kids could do a better, more open and honest job on a 5th the money.
    How, as a people of a beautiful and rich country become so gutless?

    • ‘Destroyed at the border’..yeah, right, more like the packaging was destroyed & re-branded…..the story of my life..I have in my back garden a lovely piece of core-flute with Ardern’s quote re: not wanting to see anyone convicted blah blah blah printed on the back (quiet vomit) and to answer you question @countryboy ‘what do they do?’ well they do what they damn well please, mainly the entertainment industry, also police (thank you Shona for the link to stasi ) play doctors and nurses, dentists (that’s a good one), bureaucrats, teachers etc because they can.

  5. In the rest of the bloody world CBD is treated as a health supplement!!!
    Our govt screwed us, they dont care, they never did, just sucking up our votes for their own benefits and screw you, you’re all poor and cost us a fortune, no we’re more interested in rich people and their successes, the rest of you can just suffer……
    Sick of how the govt treats the sick and disabled right across the spectrum of societal need, we’re being treated like shit. This is just another chapter in that book.
    Im done voting, Im done following their rules, they call all just go fuck off.
    Katy, I dont know what dosages your son requires but it is possible to import seed from strains that are up to about 12% CBD and low THC but you would have to do so illegally or find someone to do that for you. There comes a point where you have had enough trying to deal with those narcissists who call themselves politicians, they honestly dont care, you’re son is far better off going the illegal path and doing it yourself.

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