GUEST BLOG: Katy Thomas – Why must my Son suffer without Medicinal Cannabis?

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We want to buy a house.  A home to watch our children grow up in as we grow old together.  Nothing fancy, just something safe and warm and dry.   Close to our families and close to Starship.  We make good money, both specialists in our field and supported by work that is constantly in demand.  Yet every single bank has raised eyebrows at the sums of money we spend each month on Eddy’s CBD.  Consequently, we are renting and in the midst of our CBD crisis, our landlord decided to cash in on her investment property and terminate our tenancy.  On Friday 14th May, my call time for TVNZ Breakfast was 6.30am to talk about how the Medicinal Cannabis Scheme was failing us.  I got home at 7.30am and packed and moved our house.  With 2 kids because Eddy wasn’t stable enough to return to school yet.

Let’s talk finances, or lack thereof.  CBD isn’t funded.  It also isn’t locally produced in NZ, so any CBD product currently prescribed to any NZ patient necessarily comes with the added price tags of import: namely airfreight, handling, insurance and uncollected duties.  That’s without taking into account pharmacy markups which can be compassionate or extortionate.  Precisely because CBD isn’t funded, there is no regulation on pricing which has lead to price gouging in the range of $100’s over the wholesale price All CBD products available here, even those sold by New Zealand companies; are manufactured overseas for one reason: it is cheaper.  Our insane standards for manufacture have hobbled our burgeoning medicinal cannabis industry before it had any chance grow into something affordable or accessible to kiwi patients.

Back to the numbers our banks don’t like.  Per month, Eddy’s CBD was costing us $1700 and that was with 1 of 2 products supplied on a compassionate buy-one-get-one-free discount for paediatric patients.  That is up until April when Eddy’s 2nd import of medication was seized and we had to change CBD products to meet the 2% threshold that was being enforced.  An arbitrary caveat to the use of countless full spectrum CBD products that has no basis in science and no place in an evidence-led piece of legislature.  We were taking a massive risk switching medication but we were desperate for something biochemically similar that was “off-the-shelf” compliant with our laws.  The next full spectrum, no-THC, Indica CBD product in the same range made by the same company was twice as strong and twice the price.  Overnight his CBD bill shot up to $2300.  

A few weeks later, after his meds arrived from the UK, I was stung an additional $435.54 on top of that for Customs Entry, GST, Disbursement and EDI fee.  A fee that would not be charged if our import was worth less than $1000.  I wish it was.  $1000 would buy us 2x 10ml bottles and 1x 5ml bottle of Black oil and it would last us exactly 7.5 days.  Logic tells us that based on recent experiences, we should expect delays in excess of 7.5 days and the benefit of such a small supply would not exceed the opportunity cost of waiting for it.  The inherent disabling mechanism of law at work here levels punitive measures at the patient with extra needs.  Penalising us because Eddy’s dose of CBD for seizure control is high.  

His dose is high, his scripts are large and our government just tacked on an $1000 bill to our bottom line after destroying $1000’s worth of perfectly usable medicine we cannot recoup our expenditure from.  The price of Eddy’s seizure control is calculated on a milligram per kilogram dose; currently at 20mg per kg and Eddy weighs 20kgs, 400mg a day.  You can see how this is only going to get more costly in the foreseeable future, as our 6 year old turns 7, then 8…  By the time he is a hungry teenager the numbers will be stacked well against us and our dreams of home ownership lost along with all hopes of access and affordability.  

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But the real cost of no medicine received cannot be measured in dollars, it is paid in tears by Eddy. A 6yo left to suffer untold brain damage from so many seizures I lost count. The negative impact on his mental health as a consequence of the single longest sustained period of intense seizure activity in his entire little life over these last few months cannot be over stated.  Anxiety, depression and suicidal ideation is 12-32x higher in epilepsy patients, and more prevalent in the hours and days after a seizure.  These psychologic symptoms are associated with worse tolerance to anti-epileptic drugs, poorer quality of life, an increased risk of adverse events via medical intervention and increased mortality

Withholding access to his prescribed CBD medication not only caused his seizures, it has locked him in his own personal hell and thrown away the key. We may never find our way back to where we were, I know I am forever changed.  There is a hole in my heart where my hope once lived that has been replaced with grief and betrayal.  It’s time to take cannabis out of the Misuse of Drugs Act and put it in the Medicines Act where we can be assured timely access to safe and affordable medicinal cannabis in the interest of public health.  If the Australian TGA can fund Epidiolex CBD for paediatric epilepsy patients and down-scheduled CBD for over the counter, low-cost without prescription, why aren’t we moving towards doing the same?

 

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.

10 COMMENTS

  1. I completely agree with the contents of your article. Cannabis has long been a very valuable part of the spectrum of healthy & harmless “drugs”. It was “made harmful” in the early years of the 20th century by Flexner & others who were determined to see Pharma drugs made mandatory in treatment of diseases. ALL Pharma drugs are very harmful to the health of those for whom those drugs are prescribed. Drugs.com is the website to gather the information required to learn how harmful ALL drugs are. As a NZRN, for too many years I had to dish the drugs out to patients prescribed them by doctors, who learn precious little about health/wellness. When I was able to buy a small bottle tincture of Cannabis 3 yrs ago, 2drops on my tongue 4 times/day enabled me to enjoy that year to a far greater extent than usual. Multiple Sclerosis involves considerable pain – both day & night. I must resort to Panadol – a far more dangerous drug than most people know – so I use it as little as possible. The referendum was so close, it is outrageous that govt. did not virtually ignore the difference between the Yeas & the Nos & enable those in need ready, easy access to a chemical far safer than are most Pharma drugs.
    If you can access the website “The Sacred Plant”, you might be able to source help (which I can’t provide as I’m not very computer-savvy).

  2. “Why must my Son suffer without Medicinal Cannabis?”
    Well, in my opinion, one of the reasons is because we citizens are being bullied by fools. Well educated halfwits entirely without vision and common sense.
    Look around? See the beautiful country we live on? How lucky are we? Only five million of us on a land area larger then the UK ( Excluding Ireland ) by 25 thousand square kilometres and we’re herded into a corner by the dumbest of the dumb. And that doesn’t make us equally dumb for acquiescing to their vacant minds hatching evil plans. We must remember that we’re in fact victims of a system of control levelled at us and influenced by very well educated, very well qualified, privately owned subcontractors to the gubbimint advertising agencies who do the bidding of the sociopathic perverts in political power so those in advertising can go out with their little dicks in their lily white hands to shop Prada, drive Bentley and flounce about on Ponsonby Road.
    This, on your very own The Daily Blog.
    “So John Key would kill his mother but not let his son smoke a joint?”
    https://thedailyblog.co.nz/2020/10/15/so-john-key-would-kill-his-mother-but-not-let-his-son-smoke-a-joint/
    Jonky is effectively an american republican distinguished by a nasal whine and if you think that, that rat no longer holds the reigns of AO/NZ then you’re probably unaware of just how much power our four larger foreign banksters hold over us and our governments and it doesn’t matter who’s ‘in’ either. Banksters were never voted in and can’t be voted out yet the exert unimaginable power over us.
    The decision making monied elite in AO/NZ are, by and large, a graceless greedy pack of mongrel hyenas who’s one single mantra in their hollow lives is ” Gimme, gimme, gimme.”
    Decriminalising cannabis is one step towards a progressive and inclusive AO/NZ and that’s the last thing the aforementioned wankers would want because they know that decriminalising Pot would be effectively opening the gate to let us sheeple out. ( No disrespect to actual Sheep. )
    I’ve thought of a great analogy ! Take a length of rope? No matter how tangled up it might be, no matter how knotted. One end will always connect to the other.
    While the banksters own our country Pot will never be decriminalised because the process of pot decriminalising is an indication that we, the people, are determining our own social trajectories… Not the fucking evil bankster who simply want our AO/NZ for their rich pals.
    And for those interested it might pay to know your enemy.
    This old creep is more than a nightmare in a frock.
    ruth richardson. Short in the arse, mighty in the sociopathic ego.
    Check out her credentials here?
    http://www.rrnz.co.nz/
    Take particular note of the ‘Mont Pelerin Society’, steeped in logical fallacies and crafted specifically to harvest people like animals.
    In short? The politic of our day is entirely corrupted by greedy lunatics and the torch shining into their lairs is that of a criminalised plant with well known and profound medicinal properties with virtually no side effects. The plants mindless demonising’s highlighting that AO/NZ is at a looming risk that we’ll lose the sovereignty of our AO/NZ.
    ( Jesus! No wonder I never get the vacuuming done…!? )

  3. Where are the Greens, Chloe, Jacinda? Time for a goddamn vote on legalising weed for medicinal purposes. Not much chance with a bunch of NPCs in charge.

    • It is legal, just overpriced. They need to introduce legislation to treat it to the same pharmac funding as panadol or ibuprofen

      • And yet it was destroyed at customs. What would Panadol cost without subsidies? This whole affair has a bureaucratic stench to it.

  4. CBD is an over the counter purchase in several locations overseas now, no prescription. My main hope was that legalising cannabis would make the non-psychoactive medical compounds easier to get. Adding insult to injury was the closing of the loophole allowing imports with a prescription. I now have to watch my partner suffer the side effects of MS while taking ‘conventional’ medicines that are destroying her digestive system and do nothing to relieve the constant pain. We now have a total of nearly 80 people in NZ who have died from taking so called ‘synthetic cannabis’. Chemicals that have absolutely nothing to do with cannabis, but were at one point more legal that a drug that has killed no one in NZ. Gutless hypocrites run this country.

  5. I believe Eddy or any sufferer of epileptic seizures should have the right to receive a medicine from any source where the supporting country cannot provide it. Andrew Little is abandoning his role as Healrh Minister to assert a Healrh standard for drugs needed to support someone like Eddy. Its cruel and questions does he have the compassion to fulfil a role such as Health Minister. Perhaps mother or woman with more understanding of the role of nurturing could provide this. Signed a caring kuia. Love you Eddy xx.

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