I am writing this as a mother, in the hope that my words may open the closed minds of our politicians and the authorities we rely upon to ensure every Australian has access to the latest medical therapies.
My 26-year-old daughter suffers from treatment-resistant PTSD and severe depression as a result of a trauma when she was only 11. We live with the daily fact that with the current treatment of antidepressants and antipsychotic drugs available to her in Australia, there is only a 5 per cent chance of her getting well. We also live with the fear that we could lose her. We have journeyed with her for the past 15 years and have seen her suffering as she has tried every treatment available to her. We have all been profoundly impacted by her illness. Our current mental health system has failed our daughter. We need answers. We need treatment. And, we need it now.
Unless you have lived with the fear of your child taking their own life, you will never truly know how it feels. Thousands of mothers live with that fear every day. Our journey has taken us to countless specialists and across the world. We have watched the work with treatment-resistant PTSD using medicinal MDMA, which is often confused with the recreational drug ecstasy. Ecstasy is frequently adulterated with more dangerous substances and taken in unsafe environments. We have also learnt about the outstanding remission rates from medicinal psilocybin (which in its natural form comes from certain mushrooms) for treatment of depression.
We are confident that these medicines, in conjunction with therapy, offer real hope. We know that no treatment, even the current ones advocated by our government, is without risks, and that the answers are not simple. But we deserve hope.
Clinical trials with medicinal MDMA conducted overseas demonstrate remission rates of above 60 per cent for treatment-resistant PTSD. We were confident Australia would embrace this research in an applied way. Surely, we would act when potentially one of the greatest shifts in psychiatric medicine was knocking on the door? You can imagine our dismay when the Therapeutic Goods Administration refused to reschedule MDMA in its recent interim decision. The news was heartbreaking.
The irony is that the TGA is already authorising individual requests from psychiatrists to use these medicines with therapy under its Special Access Scheme, but their listing as prohibited substances in schedule 9 of the Poisons Standard means there is no ability to get state and territory government approval, which is also required so that patients can be treated and have a chance to finally get well. All of this would change if they become schedule 8 controlled medicines.
What a cruel system we have. Providing hope with one hand and taking it away with the other.
I contacted the TGA for answers, and was disturbed by their response. In my opinion, their justifications for retaining the current scheduling arrangements were not based on data or science, but rather demonstrated deep bias and misrepresentation (for example, calling these medicines "illicit substances" when they would, in fact, be used only in clinical medical environments). This kind of response is offensive to sufferers and their families.
I also contacted the Royal Australian & New Zealand College of Psychiatrists, in the hope that they would show the capacity to lead us out of this crisis. I received a similar response.
These bodies must begin to rely upon the validated data generated by the wider medical community. Do they suggest the outstanding research done at the leading universities around the world is not valid or sufficient? Do they believe that countries that have enabled psychiatrists to use these therapies under expanded access schemes have done so without high levels of regard?
These therapies have been granted breakthrough therapy designation by the regulator in the United States, and my daughter should be given the chance to access these therapies in Australia. Sadly, the Australian community is losing trust in the ability of its institutions to lead us forward. They risk becoming irrelevant as more and more Australians seek treatments conducted illegally by underground therapists.
I contacted every Australian senator, and the common response I have received was: "We are sorry for your suffering but it is in the hands of the TGA and RANZCP." I elected my politicians to speak for me and lead us forward, and, as yet, few seem willing to ask if these bodies are advising them correctly and acting in the best interests of Australians. Who will challenge them on behalf of me and my daughter?
But this is so much bigger than our own circumstances. I speak also for those who don't have a voice. For the lives already lost and for the families too enmeshed in simply surviving to speak out. Our nation is in a mental health crisis, where one in five Australians have a chronic mental health condition and at least one in eight are on antidepressants, including one in four older adults and one in 30 young children.
Australia should be leading the world in treatment, but instead our system is on its knees, bogged down by regressive thinking that places us as one of the poorest-performing countries. We need innovation and leadership from our politicians and our medical establishment. We can make Australia a leader in this field. I imagine a day when the world looks to us. A day when no Australian suffers unnecessarily or dies from a treatable mental health illness.
I have no doubt that the tide is turning and we will see these medicines rescheduled. The push from Australians like myself will bring about this change. I believe the government knows this too. So, it's time. Enough procrastination, posturing and politics. Our representatives must do the job that we have a right to expect of them.
I am praying that the TGA's announcement earlier this month, that it will be seeking further advice before making the final rescheduling decisions for MDMA and psilocybin, will at last mean that the data and facts will come to the surface and block out the bias and stigma. Then, finally, change will happen. The TGA has promised an independent expert review into the therapeutic value, risks and benefits to public health outcomes for these medicines.
My daughter and so many other sufferers need this so urgently, but I am not holding my breath.
If our government and health agencies continue to fail us, we will be forced to remortgage our house and attempt to go overseas to countries that lead the world in mental health treatment. To countries that show they care with actions, not just words. I will then shout from the rooftops that my government has failed me and I am deeply ashamed of the country we have become.
Support is available for those who need it. Phone:
Lifeline: 13 11 14
Mensline: 1300 789 978
Kids Helpline: 1800 551 800
beyondblue: 1300 224 636
- Annie Mason is an experienced educator, former principal and an advocate for the legal and ethical rights of those with mental health issues.