Special approval for alternative Cannabis Based Product
29 October 2016Recent coverage on the work MCANZ has done to relieve the cost of Legal Medical Cannabis.
Recent coverage on the work MCANZ has done to relieve the cost of Legal Medical Cannabis.
Paige was the first child in New Zealand to legally access a Cannabis Based product, in this case Sativex. There was much media coverage at the time with the family featuring on Sunday, Newspapers etc. She was only 11 years old when she started on Sativex, and she has been on it ever since.
Paige is now 13 years old, her initial diagnosis with Dravets syndrome was when she was just two years old. She has developmental delays, especially cognitive difficulties, she’s now at a mental age of about 5 years of age. Paige suffers from every seizure type there is, she was having up to 20 or more seizures a night at her worst, but after starting sativex two years ago she is down to having one to three seizures a week. However lately Paige has been going through a rough patch of heightened seizure activity.
Sativex has cost the family well over $10,000 dollars so far, which her mother Kelly has had to fund herself from doing fundraisers, and she would also like to one day apply under the MOH Guidelines for a product that is both cheaper, and designed for Paediatric Epilepsy.
http://mcawarenessnz.org/2016/07/17/mc410-sativex-for-paige/
On 27th of June, Dr Huhana Hickey was on a Panel at the Auckland town hall, here is what she said about the affordability of Sativex.
Our fourth patient Warren Edney, on his severe MS and why he needs Sativex. H was diagnosed 3 years ago, and in that time his disease has progressed very rapidly, so much so that he now has little use of his legs or arms after only 3 years, the only other medical treatment is injecting baclofen straight into his spinal fluid, this Cannabis Mouth Spray is much preferred to that.
Four months ago I began the journey with my pain by taking Sativex which is essentially medicinal cannabis in spray form. Since I started the daily routine, I have not taken any morphine, gabapentin, codeine and have weaned down to only two tramadol a day, (anyone who says it doesn’t work for pain is liar)
Previously, I was on a cocktail of opiates, all at high doses and living in a constant mental fog. I still get nausea, I think because of the alcohol solution in the spray and in the morning I struggle with spasms as I take less than the recommended dose. However I am in less pain, with no insomnia and no more mental fog. The only barriers that remain are cost and the fact we have just one product when variations of cbd and thc are needed for a variety of conditions.
I am now in debt funding my Sativex, but am at a point where I know I don’t want to return to the opiods. The dilemma for me and thousands of others is the affordability and access to a variety of products that work and work well. With Sativex I can work and function in a relatively pain free manner. Without Sativex, I am not sure how long I can cope with the pain that will inevitably rob me of my ability to work and live independently and without barriers.
We need medicinal cannabis to be legal in New Zealand for those who have terminal conditions and for those who have pain conditions, seizures, spasms and other health needs that this rongoa medicine can assist with. I am inundated daily with phone calls and emails from people of all ages, backgrounds who are desperate but scared to consider an illegal option. I realise we need tests and trials, however, anecdotally, medicinal cannabis is already shown to benefit individuals in pain. It is also used regularly by many people with spinal conditions, by over 40% of Cannabis users over the age of 55 and yet Parliament still buries their heads in the sand willing to discuss euthanasia or assisted dying before discussing the right to live without pain on a daily basis. Until we get our priorities right, people will suffer and die in pain, not something I wish on anyone.
Please consider donating the MC Awareness NZ Fundraiser #MC410, to allow me to continue staying in employment in relative comfort, but also to help others in this fundraiser too, a young man in a care home due to severe Epilepsy, another with a huge chunk of brain removed for Epilepsy also, and others who will be revealed over the coming months as part of this fundraiser.
Benjamin was a happy healthy two year old boy until he started showing signs of seizure activity. His muscles on the right side of his face started to droop and his right arm started to lose its muscle control. Many tests and surgeries in New Zealand and Germany were performed but nobody could control the seizures or tell us why this was happening.
Taking epilepsy medication has always been a fact of life for Benjamin. Medications have been altered and added over the years.
Although the medications have somewhat ‘controlled’ his seizures, his seizure activity remains high and we often find him in a state of ‘overdose’. These medications have significant side effects such as aggressive tendencies, irritability, drowsiness, muscle weakness, memory loss and depression, to name a few.
He continues to have several seizures a day and his muscles have weakened dramatically. He is now wheelchair bound and has slurred speech. He has been on life support twice in the last three years and this has increased the damage to his brain and seizure activity.
We believe Medical Cannabis could hold the answers to greatly reduce Benjamin’s Seizure activities and relax his muscles so that he is able to start physiotherapy to regain some muscle strength. We are optimistic that Sativex could provide some relief for Benjamin and have been approved for a trial of Sativex. IHC (the home which Benjamin resides in) has completed a protocol to safely administer this medication
Today our charity goes live, and as a first step, we are pleased to announce this fundraiser to help 10 people get Sativex, for various medical conditions up and down the length of the country,
#MC410