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Family working with neuroscience director of Catholic hospital considering medical cannabis to treat daughter’s “diabolical” chronic epilepsy

Family hopes cannabis will save daugther

Waiting: Bill Massie, daughter Laura and St Vincent’s Hospital Brisbane director of neurosciences Professor Harry McConnell. Photo: Mark Bowling

LAURA Massie is a young Brisbane woman who has endured chronic epilepsy since she was a baby. 

Now her family is preparing for the legalisation of medicinal cannabis in Queensland from next March, with a mixture of caution and hope that finally some relief may come.

A lot of attention has been focused on using medicinal cannabis to treat epilepsy, particularly amongst children, and many families are keen to know more.

“It has been 21 years of absolutely diabolical suffering,” father Bill Massie said, who together with wife Rob have raised two older siblings and cared for Laura throughout her life.

“It has been completely confusing and debilitating.”

Laura’s condition, known as Lennox-Gastaut syndrome has resulted in seizures from an early age, and mental deterioration.

“It ebbs and flows,” Mr Massie said, but essentially it was “a nightmare”.
It’s estimated the syndrome affects 50,000 people around the world – their lives, and those of their families, are changed, forever.

There have been times when Laura has worn a protective helmet to stop injury from the falls.

At other times Mr Massie said his daughter had been less at risk of injury but had been heavily medicated to control the fits.

Her condition is considered untreatable by surgery and reliant on drugs. 

 Laura can have thousands of seizures a day. 

Doctors have tried many combinations of drug therapies over the years, but none have offered lasting results.

A few years ago, Mr Massie became aware of the growing body of research about medicinal cannabis use. 

He was highly sceptical as he started scanning the Internet, but he came to view Facebook as a “powerful research tool” on the subject.

 High expectations?

Professor Harry McConnell said it was too early to tell the real impact of legalising medicinal cannabis: “For epilepsy it has benefits treating seizures. There are finite drug applications that can be tried so any new option is potentially a good option to try for some of these individuals. It can have a role with some pain patients. I think it has a role with some patients with multiple sclerosis as well and some people who have spasticity, for example, as well as muscle cramps, muscle pain, and nausea from chemotherapy.”

Massies

Waiting: Bill Massie, and daughter Laura, a chronic epilepsy sufferer who can have thousands of seizures a day. Photo: Mark Bowling

How does medical cannabis work?

Marijuana plants have hundreds of chemicals, known as cannabinoids. The two main ones are THC and CBD. THC gives some of the pleasurable effects that pot smokers are looking for, but it also has some effects that may treat medical problems. Some research suggests that CBD may be helpful for some health issues, but it doesnít cause people to get ‘high’.

“I would have run for the hills if you would have suggested cannabis,” he said.

“It terrifies me, but with enhanced knowledge, well, I can see there have been positive results.”

Mr Massie is now weighing up medication cannabis for daughter Laura working closely with director of neurosciences at St Vincent’s Hospital Brisbane Professor Harry McConnell, a recognised expert in treating patients with chronic epilepsy.

“There are some spectacular overseas experiences with some rare forms of epilepsy,” Prof McConnell said. 

“You have some amazing stories of people who become seizure free and have their quality of lives dramatically improved. You can’t ignore those stories.

“At the end of the day is seems a very good option to give to patients who may be in the process of exhausting their options with current prescription medicines.”

Mr Massie agreed that a decision on whether to use medicinal cannabis when it was legalised on March 1 next year would depend on Laura’s condition and how her medication treatment was working at that time. But it was a definite possibility.

Background on cannabis legislation in Queensland

Queensland is leading Australia in providing a pathway to access medicinal cannabis treatment for those who need it most, in a safe, controlled way.

Last month, Queensland Parliament passed the Public Health (Medicinal Cannabis) Bill 2016 allowing Queensland patients of any age and with a range of conditions to access legal medicinal cannabis products.

From March 2017 a specialist should be able to prescribe medicinal cannabis for certain patients who have illnesses including multiple sclerosis, epilepsy, cancer and HIV/AIDS.

The use of cannabis without the appropriate approvals will continue to be illegal in Queensland.

MEDICINAL MARIJUANA LAWS STATE BY STATE

Queensland: Legal for specialists to prescribe for some patients from March 2017

NSW: Available for adults with end-of-life illnesses

Victoria: Available for children with epilepsy from early 2017

ACT: Legislation still in the works for 2017

Tasmania: Legislation for controlled-access scheme still in the works for 2017

Western Australia: Legal for doctors to prescribe from November 1, under strict conditions.

What does the Church say about using medical cannabis?

There is no problem with the use of medicinal cannabis if it used in a ‘genuine medical process’, Brisbane Archbishop Mark Coleridge says.

Archbishop Coleridge said health care professionals must take the potential risks of medicinal cannabis into account in the same way that they might consider the risks of prescribing other potentially addictive medications.

“Therapeutic use of a drug is the use of a chemical substance to resolve a physical problem,” he said.

“Abuse of use of the same drug is the use of a chemical substance to solve a problem which at its heart is spiritual. That never works. It always ends up being destructive. The Church continues to pray for those who are suffering and welcomes any new medically proven forms of medication that can offer relief.”

By Mark Bowling

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