The drug we need

Shona Macleod is a graphic design student and a medicinal cannabis prescription holder living in Wellington. She’s currently working on her final project which focuses on the stigma around medicinal cannabis in New Zealand and how design can challenge this through education, awareness, and conversation.

Featured in Capital #54
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Patients with a terminal illness or chronic pain often find it difficult and expensive to obtain medicines containing cannabis. The Government has committed to making it easier but designer and cannabidiol user Shona Macleod thinks it’s taking too long.

I originally viewed cannabis as a gateway drug, the express lane on the dark road to meth addiction. I’d been told it was addictive, deadly, and I was sure to lose brain cells. I was sceptical of its medicinal use. How could an illegal plant stop a seizure? Then I was diagnosed with a neurological condition and experienced first-hand the plant’s medicinal use and value.

In my first year of university I was diagnosed with Trigeminal Neuralgia, following a botched wisdom teeth surgery. The trigeminal nerve is responsible for transmitting sensations from your face to your brain, and when it’s damaged the nerve is essentially misfiring. Suffering from TN2, I’m affected bilaterally. The pain changes from feeling as if a vice is locked and tightening around my jaw, to Chinese burn sensations and sharp electric zaps across my face. Triggers can be anything from talking or laughing, to a slight breeze or change in air pressure. Living with this condition is tough – one minute I can be fine and the next so sensitive I can’t even let my face touch a pillow.

Traditional opioids and NSAIDs (nonsteroidal anti-inflammatory drugs) don’t work for nerve damage, meaning there is little relief available apart from antiepileptic and antidepressant heavy medication. Heavy because the brain/body adapts and builds a tolerance fast, so dosage has to increase over time. I hated the way the prescribed medication made me feel: emotional, trouble sleeping, constantly nauseous, incredibly forgetful, not allowed to drive or drink alcohol. I was 19 and felt overwhelmed by the lack of control over my life. I would try not to let on how much pain I was in because I knew there was nothing anyone could really do for me, and the doctors would tell me to go back on the medication.

I tried a variety of alternative treatments including special nerve diets, a TENS machine (transcutaneous electrical nerve stimulation), massage therapy, weekly appointments at the Wellington Pain Clinic, mindfulness, and acupuncture. The only thing that came close to relieving the pain was the acupuncture, however after going three times a week for two months, I became too sensitive and the acupuncturist told me I was a hypochondriac. My partner at the time suggested cannabis. Although still sceptical I was determined to try anything.

The relief was indescribable.

I hid my use from my neurologist, occupational therapist, and psychiatrist. I was nervous that they’d judge me or I’d get into trouble. I tried to bring up medicinal cannabis to a couple of my doctors and vividly remember being told that there was no evidence whatsoever that cannabis could help neuropathic pain and that they weren’t interested in having this conversation.

Last year in London, I met with a specialist neurologist to get more comprehensive MRI’s of my brain and spinal cord, and to talk about the possibility of having a neurosurgical procedure. The neurologist was wholly supportive of medicinal cannabis use and said that over half of his patients used it for pain relief and as an anti-inflammatory. He agreed to let me trial Sativex (a medicinal cannabis nasal spray) on the condition that I tried two other medications first. The first gave me a rash and made me vomit, and the second made me incredibly drowsy and zombie-like, sleeping for up to 15 hours a day. Unfortunately I left the UK before I could file a medicinal cannabis application.

Back home I was determined to get a prescription for Tilray, a non-funded CBD oil taken sublingually. My new GP is supportive of medicinal cannabis but the next hurdle was finding a specialist to recommend Tilray. Phone calls to my different doctors only resulted in prescriptions for other medications as they said I hadn’t tried enough options. Finally my neurologist agreed to recommend Tilray, following a personal letter and notes from my English neurologist. I don’t believe I would have had a recommendation if my English neurologist hadn’t written in his notes that Sativex was his next line of treatment.

I have been on Tilray CBD oil, three times a day, for two months. In comparison to the other drugs I was prescribed, Tilray is incredibly safe. There’s no high, no munchies, no giggles. I’m the same person, just not in constant pain. I don’t have to battle through university classes trying to focus while my face feels like it’s being twisted and contorted. I can eat carrots and apples now. I can talk and laugh without pain. I can be kissed on the cheek without flinching.

I’m well aware that I’m one of the very few “lucky ones,” with access to medicinal cannabis and a supportive network of people helping fund my medication. The cheapest Tilray option is $560 which covers a standard month’s dosage, however pharmacies can charge a fee on top of this. I have been quoted up to $800 for a month’s prescription. Many very, very sick New Zealanders aren’t in my position. They’re unable to secure a prescription or unable to afford this ridiculously priced medicine.

I was told recently at the pain clinic that I was the only TN patient they were aware of currently on Tilray; that I was a pioneering patient and how exciting that was. I can’t be excited until others have affordable and safe access. How can I be excited when New Zealanders are suffering every day on a cocktail of drugs with extreme side effects, maybe offering short term symptom relief but long term damage?

There are two problems with the cannabis discourse here. The first is the imagery used − the incessant repetition of a mysterious figure smoking a joint in the dark − which does nothing to re-educate the public or quash fear. Medicinal cannabis isn’t necessarily about smoking a joint, patients can be treated through oils, sprays, topical creams, transdermal patches, edibles and more. Accurate and diverse imagery of medicinal cannabis needs to be used.

The second is the huge misconception that medicinal cannabis is just a mild pain relief. The cannabis plant is a highly powerful and effective medicine. Research has shown its ability to kill cancer cells, slow progression of Alzheimer’s, soothe tremors and pain in Parkinson’s patients, protect the brain from trauma and reduce stroke damage.

Although there’s massive support for medicinal cannabis use in New Zealand, the pressure upon the government is not enough for emergency action and change of legislation. It’s not an exaggeration to say that there are dying New Zealanders who would benefit from medicinal cannabis, and as a nation we are denying them the right to safe, regulated and affordable medicine.

Medicinal cannabis is not for everyone, but we should all have the choice and chance to try. Please, be vocal about your support, ask questions if you are unsure and start the conversation.