I am writing this as a mother, in the hope that my words may open the closed minds of our politicians, the TGA and the RANZCP, who we rely upon to ensure every Australian has access to the latest medical therapies.
Our 26-year-old daughter suffers from treatment resistant PTSD and severe depression as a result of a trauma when she was only 11. Rape at any age is devasting, but for a child the impact is profound. We live with the daily fact that with the current treatment of anti- depressants and anti- psychotic drugs available to her in Australia, there is only a 5% 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. Tomorrow our daughter may not be here.
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 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 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 between 60-80% 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 is knocking on the door? You can imagine our dismay when the TGA 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 that 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 this will 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 found their response deeply disturbing. Their justifications 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). Their responses were offensive to sufferers and their families.
I contacted the RANZCP in the hope that they would show the capacity to lead us out of this crisis. It was clear that they cannot accept the facts which are undeniable and globally supported by leading experts, that these treatments are a viable and safe treatment option.
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 USA regulator 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 our 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”. These responses reveal that the TGA and RANZCP have too much power; beyond that of even my elected representatives. 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 my behalf? Has my government forgotten they are here to serve my daughter?
This is so much bigger than my daughter. 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 1 in 5 Australians have a chronic mental health condition and at least 1 in 8 are on antidepressants including 1 in 4 older adults and 1 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. They know they WILL lose the battle but don’t seem to care about those that will die in the final days of this “war”.
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 this week, 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 re-mortgage our house and attempt go overseas for treatment. To countries that lead the world in the treatment of mental health. To countries that care in actions, not just words. I will then shout from the roof tops, that my government has failed me and I am deeply ashamed of the country we have become.
Annie Mason is an educator with a wide range of experiences including classroom teaching K-12, Special Education and Student Wellbeing. She was a Principal for over 15 years and has a special interest in Gender Equity, Social Justice and Women in Leadership. She is a strong advocate for the legal and ethical rights of those with mental health issues.