A rare but severe form of epilepsy which affects children, Dravet Syndrome gave Katelyn a 16 percent chance of mortality, each year. It would eventually take away her ability to walk, talk and feed herself.
Katelyn’s grandparents are Barry and Joy Lambert. They sold their company Count Financial for $373 million in 2011, and Barry is a well-known investor. In 2016 he made a significant investment in Ignition Wealth, and is a valued mentor to the global executive team.
“My granddaughter Katelyn was born with a gene mutation – Dravet Syndrome. It manifests itself after about six months with severe and numerous seizures. It is said to be catastrophic, intractable and incurable,” said Barry.
“Our son searched the net and found a girl in America with a similar condition who had dramatic results from a hemp or CBD plant known as Charlotte’s Web. Our son ordered some hemp extract from overseas and gave some to Katelyn with dramatic and immediate effect.”
According to Barry, this didn’t quite eliminate all her seizures. Katelyn now also takes a product called ‘anadaHEMP’, from the Australian company Ecofibre.
Ecofibre is a company which distributes hemp-based products which are legal in the US.
“Our granddaughter’s medicine is mostly CBD but with several other cannabinoids… It is the combination of those cannabinoids known as the entourage effect that works better than just CBD.”
While it may be legal in the US, there are still regulations stopping it in Australia. Hemp as a food source has only just been allowed, despite it being an established fact that hemp seeds contain no cannabinoids of any type and no THC meaning that there is no drug value.
“CBD [cannabidiol] does not give you a high and [is] best known for the treatment of epilepsy,” he said, explaining, “The police thought it would send the wrong message to allow Australians to eat hemp seeds.”
“It is currently sold under the Thompsons Foods brand through Chemist Warehouse. Increased acreage is being grown in Tasmania so in a few months you should see it become more readily available.” These hemp seeds grown in Tasmania as well as anadaHEMP, are both controlled by Ecofibre.
A man of action, Barry says that Katelyn is the reason he chose to invest in the company; after seeing how their products helped his granddaughter, Barry joined them as chairman.
“Our son introduced me to the founder of Ecofibre. The company had run out of money and with no understanding [of the] industry, I thought perhaps I should save this Australian company and maybe help Katelyn supplywise in the process,” he said.
In Australia, trying to provide cannabis products of any kind is difficult.
“It is probably a combination of gross incompetence and big pharma influence but it appears more than that.”
“Australia’s rules are such that any output will be excessively expensive which means it will be unaffordable for 99 percent of Australians.”
He told us a recent story of an accountant who was referred to him, whose 15-year-old child suffers from epilepsy. Within Australia’s system, it was costing him $3,500 per month to access the medicine.
Ecofibre’s anadaHEMP costs half that, and Barry helped him with a further discount, managing to cut off two thirds off the costs.
“Our experience is our broad-spectrum extract means he will probably use less medicine going forward. The sick need the broad-spectrum hemp extract, which works best for many indications, to be de-scheduled.”
Australia was one of the last to adopt hemp as a food source and likewise, is behind the rest of the world with hemp used as medicine to treat epilepsy. The World Health Organisation has said CBD should be de-scheduled and in the US, hemp has been declared legal and taken off all schedules – a system Barry says we should adopt in Australia.
“I hold no hope for patients because the regulations are so bad that we won’t have an affordable system for a long time.”
He says to help give Australians more access to medical cannabis, such as the one which is saving Katelyn’s life, we should de-schedule it and allow farmers to grow it freely like wheat, not in the glasshouses which we currently use.
Barry has become a committed campaigner, hoping to help other families gain access to the medicine, and funding further medical research. Barry told the AFR in 2017 that he is “relishing the fight” and that he was even considering running for Senate “on the basis that medical cannabis needs to be legal”.