Voice In The Wilderness: An Activist / Advocate’s View

26th April 2017: 'Sick people aren't being considered,' says Deb Lynch (below) 'it's time we had a seat at the table.'

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The Secretary of the Medical Cannabis Users Association of Australia tells her story and explains why the Government is getting things wrong

 

I’d first like to address the frustration Cannabis Advocates face in this country.

Aside from the tremendous knowledge-bank that exists within a large community of ‘Healers’ – compassionate suppliers of cannabis medicines and/or those like myself, certified by the US Society of Cannabis Clinicians as having undergone a robust ‘Clinical Cannabinoid Medicine Curriculum‘ – patients themselves are ignored and in many cases ridiculed by their healthcare professionals.

This, and the fact that such individuals have been placed at the periphery, rather than at the centre, of policy-making are our biggest complaints. As Professor Laurie Mather and Dr Alex Wodak – pre-eminent Australian academics with a genuine expertise in the matter – pointed out some weeks ago in The Conversation: ‘Government officials, researchers and doctors joined by patients and consumers all working together will produce better and likely less expensive policy.’ But this is the opposite of what has happened.

I am a patient first, with multiple health issues. These include Scleroderma – CREST variant (a progressive debilitating autoimmune disease with extreme pain levels), PTSD – treated and misdiagnosed from 1977-1996 for a range of anxiety and associated conditions – and chronic pain from a failed Laminectomy in 1988.

I had no option but to become an advocate and activist after finding MCUA – the Medical Cannabis Users Association of Australia, of which I am today Secretary. For 25 years, I’d considered myself a recreational smoker and was not aware cannabis oil even existed.

At the time, I was in despair; I’d exhausted all mainstream treatments including a three-day Prostaglandin infusion in hospital, nitroglycerin patches and even Viagra. Nothing worked and all I had left was opiate pain relief.

Unfortunately, like so many others, opiates make me nauseous or trigger vomiting and they play havoc with me psychologically.

I began researching the oil after getting in touch with the organisation.

The MCUA began as a Facebook group in 2014 following the public support expressed in a poll taken after the screening of the Dan Haslam story on the Sunday Night programme.

The poll asked if viewers supported medicinal cannabis being legalised and 2.9 million people responded, 96% saying ‘yes’.

Current President and founding member Gail Hester saw the need for a place where such people could come together and lobby the Government for a change in the laws.

A Hemp Party member, she approached the Party’s tech guru for assistance in establishing a presence on Facebook – and the MCUA was born in June 2014.

Since then membership has grown to 14,000 from all walks of life who have been finding relief and, in the majority of cases, getting successful results from using ‘illicit’ cannabis products.

From the beginning we asked the Government for medicinal cannabis but they’ve set about giving us what might be called ‘pharmaceutical cannabinoid medicines’ – and they appear unaware of the difference. They’ve made legislative changes that assist large companies to develop such products but which don’t allow people like me to use the natural plant – yet give the impression that medical cannabis is now legal. Nothing could be further from the truth as this website has illustrated repeatedly since December 2016.

MCUA endeavours to educate and to encourage people to help get the situation changed. For example if they come to us in desperation asking ‘Where can I get oil?’ they’re told to ask their MP the same question and put forward their case.

We also connect people to the info they need and disseminate new, relevant articles from Australia and overseas on our Facebook and website pages. In addition we run missions – called ‘e/bombings’ – targeting politicians and newspaper editors and encourage comments on the articles we publish as well as raising the subject on talk radio whenever we can. We’ve submitted questions to Q&A on many occasions and once had the ABC publish a retraction.

We organise court support crews for our people who have been spit tested or raided and busted and support parents who are being put under the DoC’s microscope. We organise rallies and events and have made public submissions to Parliamentary Inquires in Tasmania (document here), Queensland (document (here) and to the Therapeutic Goods Administration (Document here) as well as the Federal Inquiry into the Regulator of Medicinal Cannabis Bill (document here). We gave evidence at the Queensland Inquiry along with the results of a nationwide survey we ran last year on patient demand which had over 3000 responses (and over 17000 people look at it).

Most of our inquiries though relate to desperate people asking, again and again ‘where can I get oil?’

But we don’t get any publicity. We can’t afford to engage a PR company and those in the spotlight don’t mention us – they do their own thing. We became an incorporated association … we put out press releases – still we get largely ignored.

We have, on many occasions, made personal representations to politicians. We’d like nothing better than to work with them to get the legislation and/or regulations right. We’d like a seat at the table. The Authorities need to be prepared to work with patients and groups like us as well as their ‘experts’. A ’round table’ together with a study of results among existing users and testing and analysis of products being used would help enormously. There’s huge accumulated knowledge in our ranks from master growers to oil makers and healers with this expertise acquired, in some cases, over decades. It’s a tragedy the Government won’t acknowledge or utilise this – and really, failure to do so – despite being offered the opportunity – amounts to complete neglect.

In my own case, I watched a YouTube video and made my first batch of oil a few years ago. The relief was evident from the first dose.

One of the symptoms of CREST is oesophageal spasming. I’d been unable to swallow solid food for almost two years. The oesophagus would grip the food going down and the pain is extreme. Taking cannabis capsules drastically reduced both, enabling me again to eat solid food – and I got my first decent nights’ sleep in months.

I couldn’t afford to continue purchasing the herb on the black market and compassionate supplier Jenny Hallam assisted.

A parcel of cannacoconut oil & mud capsules arrived and as I had no empty gel caps to put the oil in, I took it instead from a spoon. I discovered that taking the oil this way coated the oesophagus going down – and ALL spasming disappeared. The capsules bypass the oesophagus and although they help greatly, the spoon is much more effective for me.

Necessity is the mother of invention and that’s how I came upon my next successful treatment. I’d suffered with a digital ulcer for eight months which doctors just couldn’t heal – amputation had already been mentioned. As an Administrator on the International Raynaud’s Group I’d learned that the hard Scleroderma areas which were surrounding the ulcer were relieved by keeping them moist. The hard (Sclero) skin (derma) contracts over the swollen sensitive tissue underneath and causes much discomfort and pain. Keeping it moist reduces this. Paraffin oil dressing had been my choice, so I decided to substitute some of Jenny’s cannacoconut oil for the paraffin dressings on the ulcer…and it healed in ten days!

Some two years before, I’d stopped taking my anti-depressants, anti-anxiety and anti-psychotic medications and replaced them all successfully with (smoked) cannabis. When the pharmaceutical drug-fog cleared, I realised the medications themselves had contributed to my ongoing psychological problems. I also realised that for decades I’d been disassociating or totally absent. Those who’ve suffered these side effects will know exactly what I mean.

During 1988 I suffered a spinal injury and was prescribed Rohypnol to sleep. When two at night weren’t enough, I successfully weaned from these addictive drugs using cannabis to avoid the withdrawal symptoms. From then on all I needed to sleep was cannabis which also removed the night-terrors I’d suffered with for a lifetime.

Was I really ever a recreational smoker though? In hindsight, I’d been self-treating without knowing. How many others have done likewise for their own PTSD, depression, pain relief, to reduce pharmaceutical drugs or alcohol intake? I’ve spoken with quite a few medics now and explained this to them, asking ‘Why is the person using in the first place?’ You see the light go off. Every single time, the response is the same ‘I never thought of it like that.’

Social anxiety was one of the associated conditions I suffered badly from in years past and I’d used alcohol to ease the panic attacks and fear of even speaking to anyone. However, alcohol and I do not mix well and in 2000, I stopped drinking to avoid further emotional damage to my six children because of it. The half-absent, half-crazed, sometimes-Mum state I lived in, drugged with Psych meds, had already caused life-long damage to my kids. The fact that I constantly wanted to kill myself was no way for them to grow up.

Since stopping these drugs I’ve had no further incidents of wanting to suicide, not even through the last few months in which I’ve been ill and my marriage has failed – in no small way due to the illegality of cannabis and my insistence on its use for relief and my activism as advocacate/healer.

In January a suspected cancer lesion was found in my bladder wall; I’d already lost a kidney in Feb 2016 due to Urothelial Carcinoma. For the next 6-8 weeks until my biopsy, I smashed Full Extract Cannabis Oil. When the biopsy results came back, there was only hyperplasia. No cancer cells. The equivalent of scar tissue was all that could be found. I’m not saying cannabis cured the lesion, but I’m not saying it didn’t either – and I’d like to believe that it did. No-one can say one way or another because there was no biopsy taken at the time of the lesion discovery and in any case nobody wants or is able to study the results of cannabis treatments.

By 2015, I’d stabilised my Scleroderma and had progressed from requiring Jenny to send parcels to making my own oil. I’d also been able to reduce my dose to a maintenance one.

In July that year I had an ultrasound to investigate some GI symptoms as there was GI involvement in the oesophageal spasming. This is another story in itself, in that I was not advised of this for five months, finally receiving a call in December. The issue went to OHO & AHPRA, with the offending gastroenterologist lying to AHPRA to exonerate himself and blaming a GP who was no longer my primary carer. The whole system it seems is corrupt! Moving on….

Being unaware of the cancer, I had no opportunity to treat it and by December the tumour took up the top third of my kidney and a nephrectomy was necessary. Doctors were amazed that I’d exhibited no symptoms and Jenny Hallam stepped in again to assist after my surgery, until I could once more provide my own oil.

Recently, I suffered my first Scleroderma flare in three years causing a digital ulcer on the tip of my second toe, which has progressively gotten worse. Not even cannabis oil could control the pain at one stage and I was admitted to hospital. After release I still required high doses of both the oil and opiates for the pain. The toe however still did not heal and the rheumatologist noticed on my CT scan that I had a blockage below my aorta. A vascular surgeon is operating within the next week for the blockage because until that is addressed, the now-gangrenous toe won’t get better.

I am now my own ‘support person’ but have though been helping other patients with Scleroderma, like myself. This came after I did an article in the Body and Soul section of one of the Sunday papers about cannabis and the condition. Dozens of sufferers contacted me and to this day I still send topical ointments I perfected from the initial cannacoconut oil dressings to these patients for free. I make it for the lesions from the top of my head to my ankles (imagine chicken-pox that never goes away – my symptoms are similar to that) and end up with enough to share. I do this gladly; help was given to me freely and I can’t in good conscience turn such people away.

But having to support myself, with no financial assistance from my ‘husband’ means fighting for legalisation has now become a fight both for medical reasons, and for my personal survival.  I rely on $624 per fortnight Centrelink payments, whilst my rent alone is $780 per fortnight. My son is helping to keep a roof over my head – without his help I would have been homeless weeks ago. That still leaves no money for food or medicines, let alone utility bills – a point I make because I’m not the only activist who’s marriage has failed through this work and whose suffering is more than merely through stigma.

I had and have no choice other than to stand up for the end of prohibition. I need this medicine, at a cost I can afford, and of the type I require.

But even whole plant products (and we’re a long way from those) isn’t the end of the road as far as patients’ legal cannabis needs are concerned.

Being a plant, with hundreds, if not thousands of various strains, selection often plays an enormous role in the effectiveness in treating illnesses. Among its 400 + compounds are the cannabinoids, the most notable of which are CBD & THC, but others play a medicinal role too, as do the different terpenes and flavanoids also to be found in the plant.

Think of it as having six red roses each of a different variety. Each is red and each is a rose but the terpenes within make it distinct from the next. Wine is another example. How many varieties of Riesling are there? Cannabis plants are similar. Just as each person is different, every strain is unique. And cannabis medicine very often needs to be personalised with specific strain selection, or as in my case, a blend of different strains found to achieve best results.

This can often take time, as well as some trial and error. First you need to work out whether you require a high CBD or a high THC, or which ratios in between. You choose a few varieties of your base CBD or THC percentage and then differentiate, with varying terpenes – and you’ll soon know which one works better. I learned, through blending different types, that for me to achieve disease stabilisation and pain relief, a ‘blue’ strain was needed, along with those high in THC to control the PTSD and pain. I also added a strain with lower THC and higher CBD levels to the mix, to give me the requisite CBD percentage. But every patient is different.

Having found the specific strains to give me the best results, I began trying to source the products I need. To my dismay, after checking every single authorised supplier in Canada, only one of the four strains was available and then only through a single firm out of dozens throughout the country. So the small variety of different strains and products that can be imported through TGA will in no way provide for the needs of the majority of patients.

Growing at home is the most sensible way to enable patients to access the specific types of plant they need but alongside this a cannabis industry – made up of companies big and small – could bring variety as well as economic growth to communities across Australia. The Israelis are storming ahead in this area and our Government too should be awarding licences to small farmers – to grow strain-specific varieties, as well as ‘grow-ops’ with dispensaries and wellness clinics attached all focused on patient care, support and supply.

At present though, let’s not even broach the subject of the ridiculous application process or the time involved for a three-month supply. You and your doctor will have to apply first Federally then at a State level – followed by a repetition of the entire procedure at the end of the twelve weeks. Applications for each product or device, exorbitant costs involved with going through the TGA will make legal cannabis treatment a pipe-dream for the majority.

And that’s if the TGA don’t take it upon themselves – as they did with one cancer patient- to change the doctor’s prescribed THC level because the dimwit concerned decided they were too high. In that instance, the oil which arrived wasn’t strong enough and the patient had at least 30 seizures awaiting replacement oil.

MCUA members and the MCUA of Australia Inc. have been totally overlooked by government, even though we’ve jumped through every available hoop – and patients are past tired of this: #wewilldefy is not just a catch-cry but has become way of life for many of us.

Like a lot of others, I’ve also lost faith in doctors, having experienced multiple misdiagnoses or failure to diagnose at all. Where cannabis is concerned, the medical profession’s total ignorance or unwillingness to learn anything other than pharmaceutically-based treatment methods mean they do not provide the best care for so very many of us.

As I’ve tried to explain, many of we activists, advocates and healers are ourselves, patients. Of late some of us have recorded short, to-camera videos telling of our experiences – and these I urge you to watch (mine is here, Belinda’s here, Karen’s here and others here & here).

MCUA saved my life by just being on Facebook; 14,000 other members believe the same and we’re feeling very un-noticed.

The Office of Drug Control say it starts with patients – however, patients aren’t a consideration. I heard with my own ears that organisation’s Bill Turner say that ‘international reputation’ and ‘future export markets’ are Government priorities, at the cultivators forum in Melbourne last July.

So if MCUA sometimes seems a little over-sensitive, consider perhaps, maybe we have every right to be.

1 thought on “Voice In The Wilderness: An Activist / Advocate’s View”

  1. One of the best writings I have ever read. Thanks. Governments need to think just how much money growing and manufacturing herbal Cannabis would bring to Australia. Let alone all the healing of many conditions. We have around 5 million seniors – thats a lot of votes to keep us well and able with Cannabis oil.

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