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

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.”

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.