My name is Toni-Marie Matich and I am co-founder and CEO of United in Compassion NZ, a non profit charitable trust formed early this year as a sister branch to our Australian team co-founded by Troy Langman and Lucy Haslam. I came about advocating on this issue some 4 years ago, I am a solo mother of 5 children and my eldest daughter 17 suffers from Dravet syndrome, a intractable, life limiting and progressive form of Epilepsy where she would seizure up to 1000 times a day.
My daughter has being on dozens of medications, she has undergone a VNS implant one of the first in NZ which was ineffective, high dosages of steroids, and other more ‘alternative’ treatments such as sacral massage and naturopathic remedies.
By the end of 2012 she had had 122 hospital admissions for non convulsive and convulsive status (ongoing prolonged seizure activity) some of these admissions were to ICU, and despite having over that decade 2 very proactive and compassionate paediatricians we were told to prepare for the worst and hope for the best.
My daughter at that time was largely wheelchair bound, oxygen reliant, out of school for 5 years, and we relied heavily on funded respite and other various support services, all at a large expense to the government.
Before I got married and started a family my initial studies were in science and technology, I also went on to study a certificate in horticulture from home when my eldest children were younger, over the years it became apparent that my full time job would and has been as my eldest daughters carer.
This extends into an advocacy role for every aspect of her care from special education through to funding, it is at times often an exhausting role as you try to navigate through the various appointments and systems of support.
In 2012 when we received a heartbreaking prognosis I started to look desperately into any other possible treatments that could extend her life and give her a better quality, I learnt of medical cannabis through an American Dravet support forum and to be honest I was at first pessimistic, however as I researched and reached out to those with knowledge I soon learnt that it may very well have therapeutic benefits for my daughter.
I soon learnt that due to the illegality of the plant and the lack of research and evidence of its benefits or efficacy it wasn’t available to us here in NZ.
What I did next was risky and illegal as I went about importing seeds of high CBD (cannabidol) and low THC (aka 1 compound of the plant known to get recreational users ‘high’) over 18 months I then had associates in the horticulture industry cultivate, another within the pharmacological industry was able to test the plant matter for panels of compound ratios as well as ensuring it was clean of micro organisms, solvents, metals and any other potential contaminants that could make someone unwell, this was an expensive and risky undertaking whilst caring for someone so ill.
I then went on to make the plant matter into a tincture which was again tested for adequate ratios, I consulted with several MC specialists in the states as to possible contraindications with other meds she was on and dosaging ranges, this too was expensive and time consuming, all the while constantly researching global developments.
We started the tincture in 2013, within 3 months seizures had reduced by at least 50%, by 6 months people were commenting on her speech being clear and more understandable,and she was becoming less dependant on her wheelchair or other aids, within a year she was back to attending a special school for 4 days a week and she had attended the hospital just 7 times down from the previous 122 the year prior.
Life was wonderful, we went out on outings as a family, my daughters personality was discovered as it emerged out of the cloud of post seizure state that caused such severe brain damage, my anxiety reduced and I could have a full nights sleep.
By the end of the first year I informed her paediatrician of her being on the tincture, he was surprised and also concerned, and he advised me responsibly of the possible consequences as well as being compassionate and supportive of my choice, which isn’t an easy position for a paediatrician to be in, especially when they are the NZ Children Commissioner.
In October of last year after 22 months of significant reduction in seizures and the most sustained reduction in her life thus far the seizures begun returning and unfortunately the ability to have the plant material tested fell through, it was advised that a different ratio or strain could again be effective, however I couldn’t risk not having testing ability. I have no regrets of what I did, I gave my daughter the best quality of life over that period against the odds of her condition, currently her seizures are poorly controlled and she is again regressing.
United in Compassion NZ
I want to share our story and my role within UICNZ which has seen a database of 7000+ individuals join wanting access to medical cannabis, many of these people are either out of time or out of options and their stories are overwhelmingly sad, these are individuals with cancers, intractable epilepsy,hiv/aids,motor neurone disease, multiple sclerosis, chronic pain,ptsd/anxiety, alzeimers, chrohns, tourettes – I can tell you now that illness knows no boundaries, these people come from all walks of life and yes they are vulnerable, exhausted and desperate to know if medical cannabis could possibly improve there quality of life and reduce the symptoms of their illness.
We hear and read of the remarkable stories globally and like my daughters, but what we don’t hear about is the lack of regulation of products,the patients who don’t benefit from it or those who suffer contraindications and side effect.
And the disturbing part is those out there known as ‘snakoil sellers’ who sell crap products to vulnerable unwell people at horrific prices without containing what they claim to,some of these products can be made from the by product of industrial hemp and contain contaminants that make patients very unwell, I’ve heard of stories where people have to pay $10,000 upfront before they will receive their 3 months supply! So its a industry with issue like any other and we need to take both the negative aspects and positive of this from a global perspective and consider how we can learn from it to progress logically
Earlier this year and also last week I met with the Hon Peter Dunne in conjunction with Ross Bell from the NZ Drug Foundation and with the support of the Children’s Commissioner who have both acted as mentors and advisers to me.
The meetings have been constructive and the minister has always been approachable and compassionate, he tasked me with a working group within the MOH who we frequently engage with on this issue and how to logically progress in relevance to the current political and medical landscape in NZ.
I can tell you now that I have a immense respect for those who we have engaged with,I have and am constantly learning.
The purpose of last week’s meeting with the minister was to find out whether there is the ability to run observational trials under compassionate grounds for those who would meet such circumstances and whether we could collaborate with our Australian branch in connecting the relevant Australian governments who are working on regulation and trials of compassionate access over the ditch with those here in the ministry so as New Zealand could possibly engage and contribute to such developments, or duplicate that process here, those discussions have started and are ongoing and positive.
Our Australian branch ran a successful medical cannabis symposium in NSW last year which was the catalyst for change and saw over 55 million dollars go into the research and development of medical cannabis.
UICNZ are planning on running a first of its kind medical cannabis symposium in march of next year, we will bring in international and national experts such as Dr Alan Shackelford who is our medical advisor, Dr Mike Nichols of Massey University,Dr Bonnie Goldstein, United Patients Group who have the ability to offer educative courses and seminars at a medical level supported by the American Medical Association, the lineup is looking impressive.
What we lack is support from those who could be advocating more for patients. I have written to the NZMA 7 times this year and received not one response, our organisation has approached over 200 relevant organisations in NZ over the past 2 years to garner support such as the cancer society, epilepsy NZ, Autism NZ, the MS Society and not one has responded to us.
We even approached the fundraising institute of NZ who help with fundraising for the symposium and were identified as a ‘black sheep’ with many individuals not wanting to help us due to possible conflicts of interest with other medical foundations they also work for, it took 3 banks and 6 months before we could setup a bank account.
So the issue doesn’t just sit with the MOH or the minister who in fact have been in regards to our work with them helpful and compassionate, this issue sits with the conservative public of NZ and the likes of those described above who could be doing more to support logical progress and appropriate support, education and research of this issue.
If we are to progress this issue in NZ then it must be done logically, education of the endocannabionoid system and a plant that has over 500 compounds (not just THC!) is vital, it is through education and mature balanced discussion as to how medical cannabis could be regulated here through a moderated criteria and how we can best support medical professionals so they are able to support patients that we will progress.
This past few days has seen me inundated with messages, emails and media contact as to Helen Kelly and her admittance of use of cannabis in helping her with her journey and diagnosis of cancer and again as it did with the Alex Renton case the public debate has opened, I ask that people keep an open mind on this issue and also with respect to the various frameworks needed to progress it logically
Toni Marie Matich