One in five Australians suffers from chronic pain. For many, conventional medication offers little relief.
This article is part of a series looking at the medical cannabis debate.
he stared at the exam study question in front of her, pushed the well-chewed biro back into the corner of her mouth, and frowned over the top of her glasses. Laura Bryant knew the answer to this one.
“Name the different categories of the Poison Standard,” it said.
“Schedule 3 - pharmacist only medicine.”
“Schedule 4 - prescription only.”
“Schedule 6 - poison, Schedule 7 - dangerous poison.”
And there it was, right down at the bottom in schedule 9 next to the heroin, cocaine and amphetamines, the one thing that made it possible for her to get out of bed and to attend her exams in the first place - cannabis.
While much of the debate in Australia about medicinal cannabis has focused on epileptic children or cancer patients seeking end-of-life palliative care, one of the largest group of potential beneficiaries of the drug has been largely overlooked: those living with debilitating, ongoing chronic pain.
According to lobby group Pain Australia fewer than 10 per cent of those in chronic pain are getting effective treatment, with many facing long wait times for care. Medical opinion remains divided on cannabis, with a number of respected medical bodies calling for caution rather than haste, despite studies showing it can provide relief for many chronic non-cancer pain sufferers.
Studies also show that as many as 80 per cent of pain patients are missing out on treatment that could improve their lives.
And then there are those like Laura, who despite access to some of the best treatment fail to respond to the options available.
Laura at home.
The cold Canberra weather had been playing havoc with her joints and the stress of study had caused her arthritis to flare up again. Her hands and feet had been aching a lot and the blotches on her skin had returned.
She reached for the bottle of oil she kept in the small glittery orange purse in the bottom of her backpack and placed a couple of drops of the pale yellow liquid under her tongue.
Climbing into the Daihatsu 4WD she cranked up the music and turned onto a quiet back street, avoiding the main road. The cannabis oil had negligible amounts of the psychoactive compound THC, but that didn’t stop it showing up in random roadside drug tests. At best they might take her licence away if they pulled her over, at worse they could take away her supply.
“What happened to you?,” a friend with a concerned look on her face asked as she spotted Laura hobbling towards the lecture theatre on an elbow crutch decorated with stick-on sparkles.
It was the end of first semester and like the rest of the people she had met at university, this friend had known only the good Laura. She hadn’t met the girl whose morning ritual just nine months ago had involved waking up, reaching for a fistful of pills and crawling to the bathroom where she would lie for two hours, soaking in a hot bath waiting for the stabbing pain in her back and hips to ease a little. The pain was never dull, it was always like a knife.
She remembered the day she had lined up all the pills and counted them - 28 in total. Pills for breakfast, pills for lunch and pills for dinner. So many pills they turned her sweat orange, not that any of them helped much.
Her friends didn’t know the Laura who would pass out on the hospital floor from the stabbing in her vertebra, who would answer ‘seven’ when the doctors asked her to rate her pain out of 10 because she was worried they might accidently overdose her on morphine again.
They didn’t know the girl who, on a good day, might be able to make it out of her room in time for lunch, where even if she could eat, would last no longer than 20-30 minutes before her mother Bernadette would have to help her back to bed, where she would spend her day watching television. She had watched a lot of television in the last three years since the ankylosing spondylitis became worse.
“Name the five movements of hand hygiene.”
As she looked at the test questions she thought about the 30cm-long needle with the 45-degree bend in it the doctors had pushed into her spine, and she thought about the day she had begged her mother to help her end it all and to put her out of her misery.
Left: Laura leaves hospital with a fresh bag of medication. Top right: during a painful flare-up; and Below right: Being taken from her south Canberra home in an ambulance.
This is your life now
It had started with the usual low expectations as Laura made her way into the specialist’s office. The doctor had tried to break the news to her patient gently, but she didn’t want to give false hope, and she knew this was going to be a difficult conversation. She shifted uneasily in her chair.
“If this doesn’t work, I’m afraid this is pretty much it,” the doctor said, as they discussed changes to Laura’s cortisone and biological injections.
“You’re on everything we can give you, there are no more treatment options.”
“So you’re telling me basically my life is going to be spent horizontal in bed,?” Laura asked.
“What about trials, what research is happening, where can we do our own research?,” her father David began asking.
“I’m sorry, I’ve run out of options,” the specialist repeated, shaking her head.
“We’ll go overseas if we have to,” David said, but they already knew that was unlikely to be a solution. Weeks earlier Bernadette had asked a friend in the medical sphere to pass Laura’s treatment notes to his international contacts and the answer had come back the same each time. Sure, there were experts at the Mayo Clinic and elsewhere they could talk to, but Laura was already receiving the gold standard treatment for her condition.
She she looked at the deflated expression on the doctor’s face, and for the first time the facade Laura had perfected over the years, the expression her mother had labelled ‘the mask’, came crashing down. She began weeping as the spiralling realisation that this was the end of the road hit her like a wall.
A terrible journey
The pharmaceuticals had already made it difficult for Laura to eat, but depression had also now robbed her of the will to try. Staring at the Oxycontin pills in her hand she thought to herself, “Why not just take a couple of extra and be done with it?”
Since returning from the last doctor’s visit her parents had become too scared to leave her in the house alone.
“This is going to be your life,” the doctor had said to her. But what sort of life was this for a 20-year-old?
Her little brother John had been due back at boarding school in Sydney a few days later, and even though the long drive was likely to be difficult, David and Bernadette decided they would try to take Laura to the South Coast on the way for a few days in an attempt to take her mind off the grim prognosis the doctor had handed her.
On arrival David tried a couple of times to coax Laura out of the house and down to the beach, but she just shook her head each time as she pictured trying to walk on the soft sand and the pain that was likely to cause.
As the time came to take John to Sydney, Bernadette loaded the back seat of the Audi Q7 with pillows, blankets and an esky of healthy snacks from the new diet they were trying that was supposed to help relieve pain. Laura swallowed another fistful of pills and climbed in the back.
By the time they reached the outskirts of Sutherland Shire, everyone in the car knew they were in trouble. It was the Monday night of the Anzac Day long weekend and the GPS had taken them the wrong way. They were now stuck in a traffic jam. Laura, doubled up in the backseat, began screaming.
“I don’t want to do this anymore, I can’t do this, I can’t do this!”
Rain was pelting down outside, and Bernadette swung the SUV into an empty unlit car yard on the side of the road. She began frantically groping in the dark, in the pouring rain, searching the back of the vehicle for the packet of Valium hidden somewhere in the luggage.
“It’s going to be OK,” John said, grabbing his wailing big sister’s hand, waiting for his drenched mother to reappear with the pills. But by now tears were streaming down his face too.
Finally back in the car, Bernadette looked at the pills in her trembling hand.
“Just give them to me!,” Laura screamed, and for a fleeting moment Bernadette thought about giving her a lot.
As they finally arrived at the house where they were staying, their friends opened the front door to find the exhausted, tear-stained family in their driveway, and knew immediately what had happened. As they scooped up Laura and took her in for a hot bath, Bernadette lingered for a moment in the driveway hugging her 16-year-old son, trying to process what had just happened.
“Honey, it’s going to be alright,” she said, as she tried to comfort him. But neither of them knew if that was true.
The pills had made it hard for her to concentrate on a book or to read for very long, so Laura had filled her days instead watching television. Lying in bed one day, a show came on about children in the United States suffering seizures and a company called Charlotte’s Web which was growing a low-psychoactive strain of cannabis that was helping them.
And then the narrator made a passing reference that almost made her fall out of bed - it was helping arthritis sufferers too. Laura turned to her computer and started typing.
“I know you’re in the US and I’m in Australia and that you can’t help me directly,” she wrote to the Colorado-based company, “but can you give me any advice or put me in touch with people here? I’m desperate.”
Unbeknown to Laura, her mother had been searching the internet too. Bernadette had pretty much given up sleeping since Laura’s symptoms had worsened, preferring instead to spend her nights sitting in bed trawling through medical websites on her iPad.
As she flicked over page after page of information she had already read a hundreds times before, she stumbled on a conference in Tamworth where some of the world leaders in medicinal cannabis would be speaking. These were not hippies with backyard plots, they were scientists and doctors from countries like Canada and the United States, respected people already running large scale state-sanctioned cannabis crops for medical production. Maybe this could be a chance?
A few weeks later as she sat with her parents on the terrace next to the pool looking out at the view of Black Mountain across the valley, Laura opened the bag with “Laura’s weed” that her brother had scribbled on the side, packed up the pipe in her other hand and struck up the lighter.
Laura at Oztag.
A few days later the cannabis oil was available, and the morning routine of pills, bed, bath gradually started getting shorter.
Within a fortnight the stiffness in her pelvis had eased, and she no longer needed the hot baths. One morning as he prepared to go upstairs to wake her and say goodbye on his way to work, David turned to find Laura already on her way down to breakfast.
Soon, the shower chair and toilet aids had been shifted out of the house, and her mother suggested they get a personal trainer in once a week. The two of them could work out together at home.
“If it keeps going well, maybe I’ll be able to move out at the end of the year with my friends from uni,” she said. “I want to travel, I’m feeling ambitious about life again.”
As she stood at the top of the steep driveway watching Laura sprinting up the hill and joking with the trainer who wasn’t letting her stop just yet, Bernadette raised her hand to her mouth as emotions welled up suddenly, catching her off guard.
“She’s so boisterous and like a whirlwind sometimes,” she said. “David and I had almost forgotten that side of her.”
I can't go back to how it was'
“The Faculty of Pain Medicine considers that calls for the liberalisation of the availability of cannabinoids as medicines are based more on anecdote that on sound clinical science and practice,” the Australian and New Zealand College of Anaesthetists had told the Senate.
“[The faculty] does not endorse the use of cannabinoids in chronic non-cancer pain until such time as a clear therapeutic role for them is identified in the scientific literature.”
Laura had heard arguments like these before, and mostly they made her furious.
“The medical system failed me, the hospitals failed me, there are medical journals out there supporting the use of medical cannabis.
“Why did I have to get to the point where my mother had to sedate me on the side of the road and my little brother had to go through that? Why did I have to get the point where I didn’t want to live any more when there is a medication out there that has changed my life but I’m not supposed to have it?”
Her anger had morphed into a will to bring about change. Yes, there were risks in speaking out, but maybe by doing so she could help educate a few sceptics.
She wanted to track down every member of parliament who opposed changes to the drug laws and shake them. She wanted to show them the photo of her gripping the bars on the end of the bed with white knuckles, her face screwed into a ball of pain, or the one of her in a wheelchair with tubes coming out of her nose, and then to ask them whether they thought it was ok to make her go back to that life.
Reading through the Facebook group set up for Australians with ankylosing spondylitis one evening, she began scrolling through some of the new posts.
“It's hard to have a positive attitude when you know you are stuck with this for life. I just want to be able to do simple things that I use to with no pain. Do any of you out there feel the same?,” read one.
“What the hell is wrong with me?!,” asked another. “I am in so much pain. A 30-year-old shouldn’t hurt this bad.”
She wanted to tell them that a couple of drops of CBD cannabis oil every morning was all they needed. But she worried that if she did it could see a rush of people trying to get access to the same limited supply she relied on, and the one thing she couldn’t contemplate was going back to the way it was before.
There were also no guarantees it would work for others, and she had been using it herself for less than a year. What if she built up a tolerance to it like she had to other drugs?
She could read no more, and closed down the page.
She thought about her little brother crying in the back of the car in Sydney, holding her hand, and wished he had never had to do that. She thought about the first time she had been strong enough to babysit her nephew and take him to the park to play and how it had made her sister so happy that she had cried.
And then she thought about all the stories on the Facebook group she had read but never responded to, who were all just as desperate as she had been.
“I want to show the sceptics that I am not some 20-year-old stoner, that this is medicine and that it has given me my life back. I want them to know that without it, I will go back to the way I was, and even if my condition isn’t life threatening, the sideeffects of it are.”
And then she thought about how lonely she had been, stuck in her bedroom day after day unable to do the normal things she now took for granted, like hanging out at her friends’ houses in the evenings, or going out for burritos.
“I think I will start contributing to the group,” she said. “I want people to know there is hope. I want them to know not to stop trying.”
Words, multimedia: Scott Hannaford
Photography & video: Jay Cronan
© Fairfax Media, 2015