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!
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.