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Cannabis Helps My Epileptic Son. If Only We Had Known Sooner

Patients, like my son Ben, don’t have time to wait.

19/05/2016 6:41 PM AEST | Updated 15/07/2016 12:52 PM AEST
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The debate can no longer be about whether to provide access.

In 2012, when other parents were trading stories about the difficulties of balancing homework with football training or swimming lessons, I was in my garage painstakingly measuring amounts of a schedule one narcotic to extract medication for my son. Tinkering with lab equipment and solvents usually only found in chemistry labs, I was trying to purify compounds from cannabis -- not to get high, but to save my son's life.

My son Ben has suffered thousands of seizures in his six-year life. Treatment-resistant epilepsy in children is a cruel disease that can lead to significant cognitive, motor, and behavioural delays and, not surprisingly, death.

After exhausting approved treatment options, including a dozen different anti-seizure drugs, surgical implantation of a nerve stimulator, injections of high doses of steroids and even brain surgery removing half of his parietal lobe, he is finally experiencing some relief thanks to a drug regimen that includes a component in cannabis, cannabidiol (CBD).

My son has suffered severe brain damage as a result of years of seizures. It is excruciating to ask what Ben would be like today, had he experienced relief earlier in life. We will never know the answer and not because science has failed him; policies dictated by an inexplicable social phobia of cannabis have.

Since March 2015, I have worked as the Director of Clinical Research at Tilray, a federally licenced medical cannabis company in Canada, whose work helps patients like Ben every day. Despite a growing number of companies like Tilray around the world, much of the public discussion on medical cannabis is still focused on animal models and the potential harm to public health, rather than how to advance our clinical understanding of the therapeutic value of cannabis. This is disappointing to those of us interested in improving the quality of life of patients suffering now.

The snail's pace at which clinical research on cannabis is proceeding is not meaningful for patients in distress in the present moment. There is an overwhelming amount of evidence that components found in marijuana can provide significant relief from disease related symptoms, such as nausea caused by chemotherapy, in addition to changing the course of life threatening diseases, such as some specific cancers such as glioblastoma.

As a mother, I am furious that the US government has discouraged research into these potentially life-saving therapies for years by restricting clinical research. As a scientist, I decry the government for interfering with scientific freedom.

I am thankful that this isn't the case everywhere and I am particularly excited about the progress in Australia. It has some of the most forward thinking investigators in the field of clinical research on cannabinoids and at Tilray, we are delighted to collaborate with the NSW Government, the Chris O'Brien Lifehouse and researchers at the University of Sydney, to advance our understanding of the therapeutic potential, as well as potential risks, of cannabinoid use in specific diseases. Tilray is also working with the University of Sydney on a clinical study that examines the effects of cannabis on driving ability.

Despite this progress, there is still much work to be done. While Australia's Narcotic Drugs Act was passed in February allowing the cultivation of cannabis for medical use, the bill does not address distribution, supply or prescription. Medicinal cannabis remains an illegal drug.

Without access to legal medicinal cannabis in Australia, patients are forced to travel overseas for treatment. Tilray has been supporting a Queensland patient to get access to medicinal cannabis through the Therapeutic Goods Administration (TGA) Special Access Scheme, who was required to travel to the United States to determine whether medicinal cannabis may be beneficial to him. Despite having experienced benefits from medicinal cannabis in the States, and documenting these benefits with the help of a doctor, upon returning to Australia, it has taken his family more than a year to obtain TGA approval under the Special Access Scheme.

Compared to the Canadian system where patients receive their medicinal cannabis in the mail following recommendation from a doctor, the lack of access in Australia is disturbing. It is apparent that we must expedite access to medicinal treatments, especially in the case of terminally or severely ill patients who may not have months or years to wait.

Queensland's Draft Public Health (Medicinal Cannabis) Bill is a good step towards this, allowing patients to legally and responsibly access medicinal cannabis treatments. However, the multiple steps required to administer the medical cannabis may not allow patients to access treatment in a timeframe that matters.

To be absolutely clear, the debate can no longer be about whether to provide access. We must now focus on enacting thoughtful policies that will ensure access to safe, well-defined preparations, allow for research and collect information to inform treatment. Global policy must make room for full scientific inquiry into standardisation of the life saving treatments many people already know exist. It must remove itself from the doctor-patient relationships it so often obstructs.

Now is the time for momentous changes in global cannabis policy. Discussions of cannabis legalisation inevitably involve political, social, and public health concerns, but clinical research should not be mired in political agendas; it should be a matter of scientific investigation. Patients, like my son Ben, don't have time to wait.

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