In the first of a two-part interview, LeafCann chief executive Elisabetta Faenza tells Cannabiz how a rare genetic condition in childhood shaped her interest in medicine and propelled her quest for plant-based solutions.
Elisabetta Faenza remembers the moment well. It arrived during yet another visit with her mum to an Italian hospital. Sitting in a consultant’s office, both mother and daughter listened to the prognosis for Elisabetta, then just 11 years old.
The news was shattering. In all probability, the consultant told them, Elisabetta would be in a wheelchair by her 14th birthday, and unlikely to reach adulthood. And this after she had been making good progress.
“I remember looking at my mother’s face and just, I mean, she was devastated,” Elizabetta recalls. “She had heard this over and over and over again and each time she and my dad would sell whatever they had, do whatever they needed to have me survive. And now she was told this devastating news that her daughter, who was really bright, and now doing well at school having previously been too ill to attend, was unlikely to make adulthood.
“I just remember making my mind up there and then that I was going to do whatever was required to stay alive.”
True to her word, Elisabetta, now 55, did just that. But beyond just surviving, she became a mother-of-four after being told she would never have children. She immersed herself in medical science to better understand her survival. And now she runs LeafCann, one of Australia’s highly ambitious medicinal cannabis operations. Drawing on her unique and personal experiences, she is set on providing hope and respite to those in need.
The drugs don’t work
Elisabetta was born with a rare genetic condition that led to a range of deeply traumatic medical issues. With Australia unable to offer sufficient remedies, her Australian-born mother Ronda and Italian father Alfio sold everything to send their daughter to a pilot health program in Italy where they spent years searching for answers. While her father raised finances in the desolate mines in Coober Pedy, her mother, with little grasp of the language, navigated the Italian health care system.
“You can imagine how tough it must all have been,” Elisabetta says.
Eventually, they were told their daughter was suffering from a range of conditions known as neurocristopathies which, broadly, effect the ability of nerves to respond to functions of the body. In Elisabetta’s case, that impacted the bowel and the mitral valve. She could not process foods, her body unable to break down amino acids. As complications grew, she suffered four strokes as a child, three more as an adult.
“At various stages my parents were told I wouldn’t make it to kindy, or high school or adulthood, they lived with that constantly,” she says. “I’d had four strokes in sixth grade, which is the final year of primary school, and they didn’t know what was going on. Finally, they were able to figure out that levels of amino acids were building up toxically in my body because my liver couldn’t process them, so they put me on an amino acid-sparing, protein-sparing diet.”
It was at this point, as the doctor delivered the heartbreaking prognosis, she gazed at her crestfallen mother and made her pledge.
And sure enough, the little girl from Australia kept defying the odds. Even more remarkably, she did so despite her body rejecting many traditional drugs.
Elisabetta explains to Cannabiz: “I have a very different liver enzyme profile to most people and process some things much too fast and other things not at all.
“What that means is that drugs don’t work on me as they do with other people. As an example, if I took codeine my body would process it into morphine in seconds and I’d be unconscious, so I have to be extremely careful with any drugs.”
But neither can she take phytocannabinoids. The reason for that, as doctors later discovered, is that her body is unable to degrade endocannabinoids, leaving them to circulate in her system at much higher levels and for much longer periods than is usual. And it might just have saved her life.
“It’s been postulated by some researches that this is one of the reasons that I’ve actually come back from my strokes,” she says. “My endocannabinoid system is so well toned that my body rapidly heals itself. And that is certainly true. I can get very sick, but can bounce back really fast. But it means that I can’t take phytocannabinoids because my levels are so high.”
Elisabetta is now going strong, despite intermittent “episodes”. To illustrate the sometimes bizarre nature of the episodes – when her body “hits a wall” – she tells of an experience some years ago at her workplace.
“The office where I worked had jasmine plants right near the air conditioning unit. And when they bloomed, all of a sudden I couldn’t breathe. The same amino acids that I have trouble breaking down when digested are very similar to the scent of the jasmine. So I became overwhelmed. My body couldn’t cope and sent me into this episode. So it can be very random.”
The plant-based pathway
Driven by her own survival, as she puts it, Elisabetta had already developed a passion for understanding medicines when, in the 1990s, the endocannabinoid system was discovered. As research developed, so did her interest.
Lamenting the industry’s approach to traditional medicine, she insists plant-based medicines offer a different path.
“I can’t take Panadol or any of those off-the-shelf medications because the prepared doses are just too high for me. And that’s also very true of children that have rare conditions because drugs just aren’t made for them,” she explains. “Drugs are modelled on your average healthy university male student, right? There is very little real testing on populations of women and certainly not on minorities of people with rare diseases. You often see children with epilepsy or one or other cluster of rare conditions having trouble getting treatment because drugs can be completely toxic for them.
“So from the late ’90s all of this evidence was arising about the benefit to children, and people with rare diseases, of phytocannabinoid medicine. That really peaked my interest and furthered the thesis that my high levels of cannabinoids helped me to survive what otherwise would have been quite catastrophic illness.”
She met Dr Roger Pertwee, one of the father figures of the endocannabinoid system, in Scotland, where, during a “fantastic conversation”, he described her as his “mouse model” for people with high levels of endocannabinoids.
“The research that has arisen into phytocannabinoids and the endocannabinoid system have been a godsend for me to figure out why on earth I am how I am and why I have the reactions to the world that I do, both my strengths and my weaknesses. It’s been so enlightening,” Elisabetta says.
“I’d always had a real interest in nutrition because I have to be careful about everything I eat, and in supplements I take. Some supplements and plant-based medicine have been fantastic for me, but others can be highly toxic, and that’s simply because of my liver enzymes. And I’ve always been disappointed with the nutraceutical sector in that they will prepare medicines at pharmaceutical standards but will very rarely put them through the rigours of testing. And the very people who want to take these products, like me, need more certainty than the general population because we’re so sensitive.”
The origins of LeafCann
This natural interest in the sector, fuelled by her own condition and unlikely survival, formed the backdrop to LeafCann. It was, she said, an idea that has been with her all her life. But as the Canadian market boomed, it became clear that cannabis was the key investment driver.
“I asked my brother, who is a financier, about possible funding. He came back and said there is real interest in plant-based medicines but told me everyone is asking about cannabis.”
The problem was that medicinal cannabis, at that stage – early 2016 – was still legally off limits in Australia. But timing, as they say, is everything.
“Soon after, legalisation was passed. We didn’t actually know it was about to happen as we hadn’t been tracking it. But as soon as it was legalised all those people we had been talking to came back to us with renewed interest. The journey began from there.”
So has LeafCann been a personal crusade?
“Oh definitely,” she says.
Remembering the sacrifices her family made, she adds: “My parents never financially recovered. Just as I seemed to be getting better, something new would strike me so they would never get ahead. And I could see the cost to my younger brother and sister. They paid a really big price. We were always struggling financially and all of the energy and tension that went into having a child with a rare condition, and coping with constant bad news.”
Elisabetta’s mum was just 44 when she died. And when she meets parents from around the world, she recognises the pressure and anxiety that was inherent in her late mum.
Among them is Helen Deacon, a high-profile UK cannabis campaigner and mother of Alfie, whose epilepsy has been controlled by cannabis oil.
“When I look at Helen, I see my young mum, I see the stress, and I keep saying to her ‘please look after yourself because my mum died at 44’.
“I’m now more than 10 years older than she was when she died. And the irony is incredible. When you’re a child and not expected to live, and then you do and become an adult, it’s a really weird place to be because nobody expected it.”
She has also been an inspiration for other families facing similar battles to those of her parents. After a speaking engagement at one US conference, Elisabetta was approached by a woman whose daughter was suffering from the same condition.
“I was able to say ‘look, get her treated for these sorts of things’. I don’t know if her path will follow the same progression as mine, but she wrote to me saying she had read case studies of me as a baby and that was why she knew her daughter could survive.”
According to Elisabetta, LeafCann will remain underpinned by three core pillars of quality, consistency and value.
The first of those is a prerequisite of all Australia-made medicinal cannabis; it must follow Good Manufacturing Practice. Equally, the product must be consistent, she says, and work “from the first drop to the last and work from batch to batch”.
Achieving this aim will give doctors confidence.
“There can’t be variability. Doctors are used to prescribing one active and if they want something else to combine with that then it’s another medicine,” she says. “The difficulty with medicinal cannabis is that it has hundreds of molecules that somehow have to be dosed. And it can vary from plant to plant, growing condition to growing condition and extraction methodology. But we need to provide them with consistency.”
“The third pillar that is so important is value. I don’t want anyone having to re-mortgage their home to keep their child alive so we want to ensure that what we’re bringing to the market is going to be sustainable.”