Asking for medicinal cannabis

The Dominion Post had an article yesterday on The patients asking for medicinal cannabis.

Huhana Hickey has multiple sclerosis and has been in a wheelchair since 1996. She is in pain every day.

“I’m on tramadol, morphine, Paramax and codeine.”

The medicines she takes for her condition make her tired, so now she has weaned herself off most of them.

“I’ve had to come off it, but I got all the withdrawals.”

“The tramadol gets me through that bad time and then I get on with it.”

“I’ve got a headache today, I know I’m going to be exhausted tonight, and I know that I’m going to need to take some morphine just to have a break from the pain tonight.”

“I don’t like it, I don’t want to, but I have to, because there isn’t the alternative.”

The alternative, Hickey says, is cannabis.

Her doctors have told her medicinal cannabis could help.

“They are all in favour of it, my neurologist, my pain specialist, they all want it to be legal,” Hickey says.

Under current law they could ask the Ministry of Health to be able to use it.

There is now a powerful lobby seeking more widespread public access to medicinal cannabis. It includes Children’s Commissioner Russell Wills, a paediatrician, who saw a dramatic change in one patient with intractable epilepsy after she got access through her mother to cannabidiol (CBD) oil.

“The child had a 50 per cent reduction in seizures as well as a substantial improvement in quality of life,” Wills told The Dominion Post.

Patients report that cannabis and medicinal cannabis not only relieve pain and stop seizures, they can transform their quality of life.

But Wills –  and the Government – are cautious. The science of medicinal  marijuana “is still in its infancy,” says Wills.

Associate Health Minister Peter Dunne says the issue is about giving people “access to a high quality, pharmaceutical product that is safe, reliable and that will alleviate their ailments.”

Dunne tweeted a couple of corrections about the article.

Generally good piece on medicinal cannabis in today, but with two gating errors: my approval is not required for Sativex and 1/2

Australia has not legalised medicinal cannabis – they have merely announced they will permit clinical trials, something already ok here

There will be an interview with Dunne on Q & A this morning about medicinal cannabis, along with CEO of United in Compassion, Toni-Marie Matich

Do you think more New Zealanders should have access to medicinal marijuana?

We interview Associate Health Minister Peter Dunne and Toni-Marie Matich, a mother who has started a campaign for medical trials and better cannabis based medicines.

Watch Sunday 9am on TVOne

Matich has been working heroically for a sensible approach to enabling the use of medical cannabis in New Zealand.

Is it too much to ask for medicinal cannabis? As long as it proves to be safe enough then no. It should be a given.

A link to the interview: Dunne open to Medicinal marijuana (13:19)

An open letter from Toni-marie Matich, CEO of United in Compassion NZ, about Medical Cannabis in NZ

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

Historical Medical Cannabis Policy Briefing with New Zealand Healthcare Officials

From PRNewswire:

United Patients Group Participates in Historical Medical Cannabis Policy Briefing with New Zealand Healthcare Officials

The New Zealand Drug Foundation in conjunction with United in Compassion New Zealand call upon United Patients Group to contribute to a first-of-its-kind collaboration between US and international experts to further explore cannabis as a possible therapeutic treatment in New Zealand for a range of conditions

SAN FRANCISCO, July 23, 2015 /PRNewswire-USNewswire/ — United Patients Group, the leading medical cannabis information and education site, disclosed their participation in a history-making policy briefing held last week in Wellington, New Zealand with key members of the New Zealand Drug Foundation, United In Compassion New Zealand, world-renowned researchers and leading medical cannabis physicians.  United Patients Group will act in an ongoing advisory and consultative capacity to the New Zealand working group in conjunction with the Ministry of Health, to further explore and initiate potential phase 1 medical trials to examine cannabis as a possible therapeutic treatment in New Zealand.

The esteemed invitation-only panel are made up of experts from across the medical cannabis care pathway and included New Zealand and Australian participants, along with several key experts from the United States, including United Patients Group.

John Malanca, founder of United Patients Group commented, “We are honored to be a part of such a ground-breaking and historic effort and are incredibly impressed that the New Zealand government has listened to its constituents and are making a concerted effort to explore thoughtfully and swiftly the benefits of cannabis for medicinal purposes.”

Background
In May 2015, after intense petitioning by United in Compassion NZ, recent media coverage of high profile medical cases and resulting public pressure, New Zealand’s Associate Minister of Health, Peter Dunne, agreed to start a dialogue in order to become better informed about the process of bringing medical cannabis into New Zealand for potential research and development purposes.

Dunne set up a team to explore the current climate regarding medical cannabis in New Zealand and formed a Ministry of Health Working Group, led by Dr. Stewart Jessamine, current Director of Public Health for the Ministry of Health in Wellington.  Jessamine also heads up Medicines Control which functions as a regulatory team within the Ministry of Health that oversees the local distribution chain of medicines and controlled drugs within New Zealand.  Jessamine is also an executive board member for the World Health Organization.

With a marked shift in public opinion toward legalization of cannabis for medical purposes worldwide, New Zealand (like the US) is re-examining its long-standing policies toward the (currently illegal) drug.

Compassion Melds with Science
Malanca further commented, “Fundamentally, it’s difficult to ignore the daily barrage of stories coming from all over the world where medical cannabis is cited as having an effective impact on the relief and treatment for patients living with chronic and life-threatening conditions such as Dravet Syndrome to brain cancer.”

It was Malanca’s own personal experience with the devastating diagnosis of his father-in-law’s lung cancer (which had metastasized to the brain), that led he and co-founder, Corinne Malanca to medical cannabis as a last lifeline for their family member, Stan Rutner.  Five years later, Stan Rutner remains cancer free (both brain and lung scans are clear).  The duo formed United Patients Group in 2010 in order to provide reliable, comprehensive information on medical cannabis to individuals around the world.  The online site has expanded to include information for caregivers, physicians and treatment facilities throughout the US as well as online CME (continuing medical education) courses in medical cannabis .

New Zealand Seeks US Expertise
Toni-Marie Matich is a mother of a teenage daughter suffering from Dravet Syndrome.  Matich also has an early education in science and horticulture. They live in New Zealand, where like many other countries, cannabis is illegal.  She had heard the story of young Charlotte Figi, the Colorado child who was suffering from 300 grand mal seizures per week that was being successfully treated with medical cannabis.

After exhausting all options available in New Zealand, and her daughter still suffering hundreds of seizures a day, Matich  began working behind the scenes for several years to try and raise the issue (and awareness) of medical cannabis, gaining the support of the NZ Children’s Commissioner, and the CEO of the NZ Drug Foundation along the way.  She became the New Zealand representative to United in Compassion Australia in 2014.

“Due to the laws criminalizing cannabis in New Zealand, it isn’t a treatment that our doctors or other health professionals are familiar with, therefore the ability for a doctor to have an open mind and discussion with their patient is non-existent and we would like that to change. I recognized that United Patients Group was leading the way in information across the entire spectrum of the medical cannabis movement in the US, as well as providing the educational resources for clinical and medical professionals, so I sought them out.”

Matich secured a meeting with (Associate Health Minister) Dunne, known for his vehement opposition to legalizing cannabis.  “Dunne listened and showed compassion.  To my surprise he immediately tasked a working group within the ministry to meet with us and engage in developing our initiatives.   A key component was to educate individuals on medical cannabis, so we immediately brought in United Patients Group.”

The policy briefing was hosted by the NZ Drug Foundation which functions as a charitable trust dedicated to advocating for evidence-based drug policies.  Ross Bell, Executive Director for the NZ Drug Foundation said, “Across the globe there’s a tremendous amount of new research coming up surrounding medical cannabis, and some of the research appears to be very promising.”  Bell stresses that at the core of the matter are the people of New Zealand, who are living with medical conditions that many of them feel may benefit from medical cannabis. “We’re thrilled to be working with experts from around the world, like United Patients Group, to address how to specifically deliver a medicine such as cannabis and to what type of medical condition while working through some of the political realities we face, just like any other nation at this time.”

In addition to United Patients Group, participants from the historic policy briefing included:

  • Toni-Marie Matich – Co-Founder and CEO, United in Compassion NZ Charitable Trust
  • Ross Bell – Executive Director of the NZ Drug Foundation
  • Dr. Russell Wills – The Children’s Commissioner (New Zealand)
  • Dr. Alan Shackelford  Harvard-trained physician and medical cannabis researcher who came to worldwide prominence as the doctor who successfully treated Charlotte Figi, the Colorado child suffering from 300 grand mal seizures a week
  • Dr. Bonni Goldstein – Medical Director of Canna-Centers, a medical practice in California devoted to educating patients about the use of cannabis for serious and chronic medical conditions
  • Lucy Haslam – Co-Founder and Director, United In Compassion Australia
  • Troy Langman –  Co-Founder and Director,  United In Compassion Australia and New Zealand
  • Knut Ratzeberg – Laboratory Director, Medical Cannabis Services (AU)
  • Dr. Helga Seyler – Liaison between The University of Sydney and Commonwealth Scientific and Industrial Research Organization (CSIRO)
  • Nevil Schoenmaker – Founded ‘The Seed Bank’ in Holland in 1984, and was one of the first legal producers of cannabis seeds

About United Patients Group
United Patients Group (UPG) is the unparalleled online resource and trusted leader for medical cannabis information and education for physicians, patients and health-related organizations.

Learn more about United Patients Group at www.unitedpatientsgroup.com

About United In Compassion NZ
United In Compassion is a non-profit charitable trust whose purpose is to educate the public on Medicinal Cannabis, supporting and facilitating NZ based research into the therapeutic effects of cannabinoid based medicines, as well as providing support to New Zealanders who would like to access legal medicinal cannabis, as well as to lobby government for legislation changes regarding the use of cannabis for medicinal purposes  http://unitedincompassion.org.nz/

About NZ Drug Foundation
A charitable trust dedicated to evidence-based alcohol and other drug policy.  http://www.drugfoundation.org.nz/

Poll supports medical cannabis, Dunne considering

A ONE News/Colmar Brunton poll shows public support for medical cannabis and Associate Health Minister Peter Dunne says “he’s open to more medicinal products being available if they undergo a comprehensive testing regime”

Should medicinal marijuana become more available in New Zealand?

The poll:

  • 47% think marijuana should be legal for medical cases
  • Nearly a quarter say it should remain illegal

So that’s twice as many think it should be legal.

  • 21% say possession of a small amount should only incur a fine and no criminal conviction
  • 9% believe marijuana should be legalised for general use

It’s not clear if they are part of one poll but the numbers suggest they are. It’s odd to pool two separate issues like that.

If so that would mean 68% think marijuana should be legal for medical cases or possession of a small amount should only incur a fine and no criminal conviction.

One News reports:

Mr Dunne says if products are “shown as a result of the normal testing programme to be fit for purpose” then he’ll permit them to be made available here.

“It depends entirely on whether it is credible, I don’t think the notion of just puffing a few joints in your backyard is credible.”

Dunne had a meeting with Toni Marie Matich, a representative of United in Compassion NZ:

Matich has a teenage daughter with a rare form of epilepsy that sees her suffer multiple seizures and says she would benefit from medicinal marijuana.

“I feel a lot of the general public, if they had a child as sick as mine, they would do anything they could to try and make their child better,” she told One News.

She’s set up an organisation called United in Compassion, which is linked to the Australian version, and met with Mr Dunne this week to discuss the way forward.

“It isn’t an overnight thing that’s going to happen, it’s going to take a long time, but I feel as a small country we have the ability to catch up with the rest of the world.”

She says more products are needed to help people with a range of illnesses

United In Compassion is a non profit lobby for the re-introduction of medicinal cannabis and a community for patients and carers. There is a similar group in Australia: http://www.unitedincompassion.com.au/

Three states in Australia are currently working together investigating the use of medical cannabis – see Queensland and Victoria join New South Wales on medical cannabis trials.

UPDATE: The poll results are unclear in the news report, I’ve asked Colmar Brunton and they have said they will put the results up on their website on Monday.