The heartbreaking reality for New Zealand patients – Organic Genetics

Organic Genetics

The heartbreaking reality for New Zealand patients. We share the story of Katy Thomas and her son Eddy.

The heartbreaking reality for Katy and her son Eddy.

Six-year-old Eddy has a life-threatening condition. He’s tried a cocktail of pharmaceutical medications but has found relief in legally prescribed medication that contains cannabidiol (CBD). However, despite the medication being legal, his mum still faces challenges getting him the treatment he needs. 

Eddy has generalised nocturnal tonic chlonic seizure disorder, which means, if untreated, as soon as he falls asleep he wakes up in terror, then starts having convulsions, overheating and is unable to breathe. At worst, he’d have seizures spaced 30 seconds apart for hours. However, with his CBD medication it’s reduced to one or two tonic seizures per night with a few seizure free nights each week. His medicine is free of THC, THCa, and THCV, which is the chemical in cannabis which makes people “high”.

Eddy’s CDB is imported because New Zealand still doesn’t have any domestic market, and the products that are approved here are very expensive. He is still also taking pharmaceutical prescription medications alongside his imported CBD, but Thomas said they’ve just not found those drugs to be as effective alone. However, in March his CBD medicine was stopped at Customs. It was eventually released, but Thomas said her boy came to her during those months crying and saying he didn’t want to die. 

Thomas said Eddy’s case is one example, where he’s unable to get access to cannabis products he’s legally prescribed as part of his treatment. In her emotional interview, Thomas said her son’s seizures are some of the most deadly, both because of the severity of them and because they happen at night. “We’ve been using CBD to give us a lot of relief from that over the last few years and the reason why I’m so upset is because we’ve only just had his medicine released to us since March, so it’s been a really rough couple of months, especially on Eddy,” she said.

But Thomas isn’t blaming Customs. “The problem is the actual law itself, you know, it passed three years ago and we go through this huge rigmarole of bringing in something that works for Eddy because there’s nothing locally available here, we don’t have a local market. We have two products that have been approved for use and they don’t work for my son.”

She said her son has been put in a “really life threatening situation just because we’ve got bureaucrats administering a law that’s supposed to be putting patients’ safety and accessibility at the heart of it and it’s just gone backwards, we’re so much more worse off than we were before the law came in”. 

The Misuse of Drugs (Medicinal Cannabis) Amendment Act was passed in December 2018. The amendment gives patients in palliative care the right to possess and use cannabis while also providing them with a defence to possess and use even illegal cannabis.

Thomas said even though her son isn’t a terminally ill patient, being cut off from his medication in March “just flies against any kind of health and safety protocol for a tonne of patients but especially epileptics with his seizure type”.

“It just means we are left in the space between and it’s still a life-threatening condition and people with chronic pain deserve to have their needs met as well. There’s just this enormous inequality across the patient population, we say some patients are more equal than other patients and I just think it’s not fair, it’s not good enough.” 

So why is the law still not under control?

Green Party MP Chlöe Swarbrick, said the simple answer was “politics”. She said it was difficult for people like Thomas who are navigating the legal system, as well as those who have instead turned to the blackmarket out of frustration.

“What that fails to recognise or understand is that we have the strictest regulatory model for medicinal cannabis products in the entire world, which actually is a barrier to products coming on the stream, in turn meaning that we can’t even get to those economies of scale in order to drive down prices.”

Swarbrick said her plea was to build a law that works, and in the interim to provide amnesty for people like “green fairies”. “Normal, average New Zealanders who are risking time in jail in order to provide relief to other Kiwis who are just trying to get access to the only medicine that works for them.”

She said the law was “broken”. “At the end of the day it is politics and it’s up to the minister to solve this problem, I’m here to work with him.”

Source: TVNZ, full article linked here

You can learn more about Katy and Eddy and their journey here. 

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