Barry Lambert

Chairman, EcoFibre

Meet Barry Lambert

Growing up on a dairy farm in the Australian Bush, I never imagined that I would grow up to be a crime fighter. I also never imagined that I would have to be.

The Nightmare Begins

My family’s nightmare began in November 2012 when Michael, my only son, discovered his daughter was sick. Katelyn had seemed a happy, healthy baby until about the age of five months when her parents found her in bed having vomited and lost control of her bowels. She also had an abnormally rapid heart rate.

 

At one point, Katelyn had as many as 1,400 seizures in a single day. We watched helplessly as this condition tore away at her brain and body every 15 seconds. Michael described it as “watching your child being electrocuted to death.”

After a five-month nightmare of emergency hospital admissions, we were told that Katelyn had Dravet Syndrome, a genetic abnormality that affects the brain’s electric signaling system and causes blackouts and uncontrollable twitching that can last for hours. The condition leads to some intellectual disability in almost all cases and often death.

At one point, Katelyn had as many as 1,400 seizures in a single day. We watched helplessly as this condition tore away at her brain and body every 15 seconds. Michael described it as “watching your child being electrocuted to death.

Katelyn had started to speak but soon went mute. During one severe episode, she was airlifted to the Sydney Children’s Hospital in Randwick, where doctors readied defibrillator equipment in case her heart stopped from the stress.

For the next year, we tried to treat the condition with conventional medicine. Katelyn was admitted tens of times to Gosford Hospital and treated with a cocktail of dangerous drugs such as clonazepam, a depressant similar to valium. At one point, the doctors were so desperate to get a large dose into her tiny body that they drilled into her bones – but the seizures kept coming.

It was then that Michael, a computer and horticultural science graduate, did what many desperate parents do. He Googled it.

Dr. Google

By chance, the internet was full of a CNN documentary aired in 2013 called Weed. It told the story of Charlotte Figi, a little girl from Colorado with Dravet, whose parents treated her with cannabis.

Michael ordered similarly low-THC cannabis online from the U.S. and Europe, where laws are less tight, but we still hesitated. In August 2014, Michael and my wife, Joy, attended a conference for Dravet families run by Professor Scheffer. A child with Dravet whose parents attended died during the conference. Scheffer gave her usual warnings about cannabis and the lack of clear scientific proof, but the only thing that registered with Joy was the professor’s final words: that sufferers could only improve if the seizures could be stopped.

Paradoxically, those words spurred Joy into supporting the use of cannabis. “I thought, Bloody hell, she can’t keep the seizures away. No one else has been able to keep them away. We have to do something.” We started giving her medicinal cannabis.

Research

In November 2014, just two months after Katelyn started to improve, Professors Iain McGregor and Dave Allsop, two pharmacologists from the University of Sydney, answered a call to attend a conference on medicinal cannabis in Tamworth. McGregor said no other university faculty bothered sending anyone to the Tamworth event. They thought it was just for stupid hippies. McGregor and Allsop had spent two decades conducting cannabis research. For all that time, they could only get funding to study its dangers; no one had offered to fund the testing of its benefits.

NSW Premier Mike Baird addressed the Tamworth conference and announced that he wanted to make NSW the world leader in medicinal cannabis research. It was a watershed moment in the politics of cannabis in Australia.

For McGregor and Allsop, it had a more direct significance. Allsop found himself at a table during a conference dinner with a man dressed like a central coast farmer. He’d seen him walking around brandishing a tube of what Allsop recognised as illegal medicinal cannabis. It was Michael.

The pair hit it off at the dinner, talking about cannabis and their shared passion for dirt-bike riding. That seemed like it, but two days later, back in his Sydney office, Allsop received a call. “My dad’s loaded and I reckon I can get him to fund your research,” Michael said. “I reckon he might give you five or six million.” Allsop thought it was a crank call – then he Googled my name and realized it was legit.

Michael and I arranged the structure of the donation through a series of meetings with Allsop, McGregor and Sydney University’s philanthropy team. We decided to up the ante and instead of the $6 million Michael had suggested, we ended up contributing $34 million. Medicinal cannabis was a cause we liked on many levels and not just because of Katelyn.

Legal Catch-22

Despite all the publicity around medicinal cannabis in Australia, including the passage of a federal law laying out a pathway to legalize the cultivation of medicinal cannabis, it is still illegal in most states to use it or grow it. The patchwork of laws creates a catch-22 that drives people like Michael to distraction. He has recently received approval from the Therapeutic Goods Administration to import cannabis oil under a special access regime but under state law possession and use is still illegal. Michael went to Gosford Police station in early 2015 to tell the duty sergeant that he was giving his daughter cannabis oil and did not want to hide it any longer. He burst into tears while making his speech. Police visited his property soon after and demanded he hand it over but took no further action. Then Michael wrote to a dozen MPs demanding a system of compassionate access to medicinal cannabis. One of them was Pru Goward, the NSW Minister for Medical Research.

 

Outside court I suggested there should be a special medical cannabis register to protect citizens while the Australian state governments finalize their policies.

“HELP HELP HELP (my daughter doesn’t speak much but she can say HELP),” he wrote to the Minister. “Children like my daughter desperately need your help. I know I am going to jail but if I don’t want to see my daughter grow up with half a brain I have no choice.” He attached a tiny sample of cannabis.

Ms. Goward reported Michael to the police. When asked for a comment, she said through a spokeswoman: “We do not want patients or their families having to play pharmacist.” Taking legal action against someone for growing cannabis for health reasons is no different than telling people they can’t eat oranges for Vitamin C. It’s somewhat of a joke.” Unfortunately, Michael was caught and prosecuted for possessing cannabis that he’d grown to help Katelyn remain seizure free. He was hoping that in court common sense would prevail, but the judge found him guilty.

The states should declare a register where people like Katelyn can register and they can test the oil to make sure there’s nothing harmful about it. The problem in NSW is confusion with marijuana and this is not what that debate’s about here. We’re not arguing about that … that’s a different issue. Perhaps one day the law will catch up with scientific evidence. Until then, I will fight until it does.