I remember clearly the first time I met
Cheri O'Connell. I approached the house in the rural town of Mia Mia last year
filled with curiosity and a little skepticism. I had heard wild claims about a
medicine made from cannabis that had cured her little girl of epilepsy. I was
waiting for “the catch”.
What very quickly became apparent was
much more incredible then I had imagined, and by the time I walked out, I had
seen enough evidence to remove any doubt from my mind.
Tara, then 8 years old, had suffered
from Dravet syndrome her whole life. It meant constant seizures, up to 200 a
day. In 2012 Tara had to be resuscitated 8 times. Her IQ was so low it couldn't
be measured, she couldn't walk without help, she couldn’t talk and she was
frighteningly thin.
"65 seizures a day works out to 23
thousand a year. That was our life," Cheri said.
"We didn't sleep more than an hour at a time
before she would have another seizure. Basically it was like having a
newborn in your house forever. She was drugged on 5 different medications, 3 of
those were benzo(diazepine) drugs, which we don't give to adults unless there's
a good reason because they're addictive."
But still none of those drugs stopped the
seizures. Cheri and her husband David were planning a funeral when a friend
suggested they give medical cannabis a try.
A few drops under the tongue, day and
night. Changes were obvious within an hour and within 10 days Tara's seizures
had stopped all together. On the 3rd of September, she will be 17
months seizure free.
I wouldn't believe it if I hadn't seen
the videos of Tara before she started taking the tincture. I've seen her
medical records, and will never forget the words of a well known pediatrician
from the Monash Children's hospital. He said Tara's response to medical
marijuana had been "nothing short of miraculous." I’ve chosen not to
name him without his permission.
That was last year. I've met Tara 3 times
since and each time she's progressed further, so much so that to the naked eye,
Tara looks just like any other happy healthy fun loving cheeky 9 year old.
But this drug, medical marijuana is
illegal. It's illegal because it hasn't been thoroughly trialled in Australia and the
possible negative long term side effects are unknown. But of course trials
haven't been allowed to happen because the Commonwealth Government
hasn't had the guts to allow certain growers to be licensed to cultivate the plant
for the purpose of medical trials.
Tara could be drugged up to her eyeballs
on addictive harmful drugs because at least those nasty side effects are known.
She might die but at least we know why. Since starting on medical marijuana,
Tara has stopped taking all other medications.
Why does it work? There are a number of
documented explanations, mostly to do with brain signaling. I’m not going to
pretend to understand any of them but what I know is that for Tara it does
work, and Australian scientists need to be legally allowed to find out exactly
why.
And then I met 3 year old Cooper
Wallace.
A few months after first covering Tara's
story, I received a phone call from Cassie Batten, Cooper's mum.
She had initially been afraid to tell
her story for fear of persecution, but she quickly learnt that she needed
public awareness and she needed legislative change, and she couldn't do that
alone.
Cooper was born a healthy little bub,
but at 4 weeks of age he caught a bacterial infection, which almost killed him.
It left him brain damaged, suffering from cerebral palsy and severe epileptic
fits, among a number of other conditions. No treatment was working, and doctors
said he wouldn't survive. As a 3 year old he couldn’t do anything for himself,
his father Rhett Wallace described his as just “a shell.”
A desperate Cassie and Rhett gave medical marijuana a try, a few drops into his bottle and he
started responding within 20 minutes.
“We thought that hopefully this would
keep him comfortable until the end but it turns out we got more than we
bargained for,” Rhett said.
“He now sits by himself, he’s almost
crawling, he’s no longer tube fed, he eats some solid foods, it’s just been a
change that we could never have predicted.”
“He is a completely different child. We
can actually have a life now with him at home,” Cassie said.
“Going into his bedroom in the morning
and finding him blue isn’t nice for any parents to face and something simple as
a few drops has stopped all of that where medications weren’t working.”
As a parent, what would you do?
Coopers seizures haven’t stopped all
together, but they’ve reduced significantly. He’s now interacting with his
brothers and sisters, which he couldn’t previously do, and he’s starting to
develop skills which he should have been learning 2 years ago.
As a result of telling their story, the
couple was arrested a few weeks ago by detectives from the Child Abuse
Investigation squad.
They were formally interviewed, and
medication was seized.
This is a family who adore their
children. A family with a chaotic living room which reminded me of my own
growing up, toys every where, kids giggling and running around, largely unaware
of the serious and somber reason this stranger (me) was in their house. This is
a family who will do anything to help their extremely sick little boy. This is
a family who has just had their “mug shots” taken.
I know where these complaints came from.
They came from a woman whose son died as a result of psychosis caused by marijuana
use. This woman had seen Cooper's story. This woman is no doubt going through
something incredibly traumatic and she has every right to fight against
anything that will make it easier for “pot smokers” to access marijuana. As a
recreational drug it can have heartbreaking consequences, often causing schizophrenia
and other illnesses, especially in people with a predisposition to mental
illness.
But that fear should not apply here.
Australia is more than capable of
regulating the growth of the plant and the production of the medicine so that
only those in true need can access it. Furthermore, by the time the medicine
reaches its final stage, the majority of Tetrahydrocannabinol
(THC), the mind altering component, is removed. So there is
little reason drug addicts would want to access it and abuse it.
I should note that last comment applies
to the Cannabinoid Tincture produced by Mullaways Medical Cannabis Pty Ltd used
by Cooper and Tara - I don't know enough to comment about other forms of the
medicine produced by other individuals and companies. Mullaways mails the
medicine to the families free of charge. I understand there’s a waiting list of
thousands of other families with sick children who also want help, who can’t
access it.
I’ve focused on the impact medical
cannabis can have on people who suffer from seizures because they’re the people
I know, and the transformations I’ve witnessed.
But Medical experts like Dr Alex
Wodak from the Australian Drug Law Reform Foundation, know the potential for medical marijuana goes far beyond seizure control.
In January he wrote:
“My colleagues and I published a paper
on medical cannabis in the Medical Journal of Australia last month.
“We noted a recent German review which
found for six different medical conditions 82 favourable controlled trials and
only nine unfavourable controlled trials.
“Cannabis is a useful second line drug
for relieving severe and distressing symptoms in a number of conditions where
the first line drug all too often fails. These conditions include treatment
refractory nausea and vomiting following cancer chemotherapy, severe weight
loss in AIDS or cancer, some forms of multiple sclerosis and chronic non-cancer
pain due to nerve damage.”
As a journalist, I shouldn’t admit this.
But I usually try to avoid covering politics. I find it all a bunch of he says – she says
– mashed up with broken promises and big egos. The important policies are often
buried behind speeches about how the opposing party is “grubby,” “out of
touch,” and “needs to come clean” about whatever the topic of the day is.
But yesterday was different.
Yesterday Daniel Andews, leader of the Victorian
state opposition, spoke about medical cannabis. He told Tara’s story without
referring to notes, and it was clear he had spoken with Cheri and David to
great lengths and genuinely understood the importance of the issue.
“There are many families who are having to go through that very difficult
process of knowing that they are breaking the law, knowing that the law says
they are doing the wrong thing when in fact they are doing what every parent
should do. Fighting for the best interest, the wellbeing, the survival of their
kids. I’m convinced that this law needs to be updated,” He said.
Mr Andrews pledged to work with the
Victorian Law Reform Commission to legalise the use of medical marijuana for
people with life threatening conditions. If elected, of course. He also pledged
to work with the experts to clear the way for thorough medical trials.
Regardless of which party leads next
year, there are a few things that need to happen, on both State and Federal
levels.
1) Medical marijuana needs to be decriminalised for patients with life
threatening conditions who have a note from their doctor. Right now. I’ve
spoken to many people about this, and that can happen. This is up to the state
government. It doesn’t solve local supply and regulation issues, but what it
means is that Cassie and Rhett, and Cheri and David can look after their
children without the threat of being charged with child abuse. The reality is,
there are already people supplying medical marijuana. While Mullaways Medical
Cannabis tincture currently hasn’t gone through the rigorous testing, what we
know is that with it, some of these critically ill children improve. Without
it, they die. There are international suppliers that have already gone through the
process, a Dutch agricultural company Bedrocan BV, Canadian biotech company
CanniMed, and Israli company Tikam-Olam. Let it be imported for patients who
have permission from their doctors.
2) Reputable local companies need to be granted tightly controlled licenses
to start growing the plant for the purpose of medical trials, and eventually
for medical supply. This requires the federal government to step up. The
Australian Medical Association says there are people ready to go in Australia,
to start testing this drug straight away, as soon as they are legally allowed
to.
The process of gaining approval through
the TGA is likely to take a lot longer, and I certainly understand that
thorough local research and trials need to happen before it’s readily available in chemists via prescription. But start now. Not tomorrow, not next year.
Last night I had 1 minute and 20 seconds to tell this story on Seven News. My attempt to hijack the entire half hour bulletin through sweet talking was not surprisingly, unsuccessful. Here it is.
