An Open Letter to Parliamentary Candidates
This is an open letter to all candidates in the upcoming Federal Election (2022).
By Tanya Dupagne.
Today I’d like to share a story that is very important to me:
Once upon a time, there were thousands of patients who became incredibly sick with similar symptoms. For an average of 10 years each, they approached doctor after doctor to try to get answers. Doctors refused to talk to them about it. They were getting sicker and sicker, so they decided to send their blood overseas to an internationally accredited lab to see if they could work out what was wrong.
The tests came back positive for numerous diseases, all triggered from the bite of a dangerous parasite no bigger than one of those poppy seeds you find on your bread rolls. When they were bitten, poisons were injected into their blood streams and for years, while they were waiting to try get answers, the poisons were slowly attacking their body bit by bit. Every one of them had different symptoms, such as seizures, extreme fatigue, passing out, muscle deformities, heart issues, balance problems and more.
The diseases they had were spread in the blood. Some of those who had children had unknowingly passed them on to their children in the womb. Some of those who had donated blood had unknowingly passed them on to strangers.
They desperately needed treatment, but the government of the day decided that the diseases making them so sick didn’t exist in humans in their country. Only their animals could be tested and treated. There was no treatment available for people, forcing those of them who could to mortgage their houses to travel overseas to try to save their lives. The ones who couldn’t afford that had no other option but to become sicker. They couldn’t work. Because the government said their illness didn’t exist, they couldn’t access insurance payouts, welfare or other help. Some of them took their own lives as a result.
The brave doctors who would talk to patients about these illnesses or offer advice on treatment were quickly struck off the medical register and told they weren’t allowed to practice anymore.
The Government eventually held an enquiry where numerous recommendations were made. Six years later, the recommendations had still been ignored, except for one set of guidelines that was implemented which made it even harder for the sick patients to access help.
The patients were left feeling neglected, abandoned and extremely disappointed in the systems they thought were there to help them.
Yes, that story is far fetched even for the best filmmakers in the world. But it’s not scripted. This is real life. This is my life and the life of my warrior friends. You may wonder which third world health system this happened in. The answer is right here in Australia. In 2022.
Let me tell you a bit more about me.
You may know me as the former Australian Rural Woman of the Year, Churchill Fellow, Westpac Scholar, Child Safety Awards Winner, Councillor for City of Kwinana, Camp Kulin Founder or as Doctor of the University Honoris Causa (Edith Cowan University). I’ve spent 17 years working over 100 hours a week with over 150,000 kids across the world, including those affected by serious trauma or torture situations.
For years, people had seen the side of me in the media. What they didn’t know was that I had a secret. I was extremely sick and going downhill fast. The reason it was a secret is despite numerous doctors visits, nobody could work out what was wrong with me, so I didn’t have any answers for anyone.
Doctors told me, and I quote, “you are a high achieving female. It’ll be anxiety, depression or stress.” Others implied it was all in my head. I’m the last person to make things up, particularly medical things. Those who knew me knew I went to the doctor on average once every 10 years, and had been known to fracture my foot and continue running a kids camp for four days until I could seek medical attention. And the only anxiety, depression or stress I had at that point was because doctors ignored me even though everyone around me could see something was seriously wrong.
I got more and more sick. Eventually, a podiatrist took one look at me walking, ran and got her ipad and videoed me with her jaw hanging open. That appointment saved my life.
15 years before, I worked at a summer camp in America, which we now know was in a Lyme endemic area. We didn’t know that then. I was out on an overnight trip and got bitten by a tick. I found the tick the next day when I showered. I did what we were trained to do – I pulled it off and got on with my day. I had a weird rash about 4 weeks later – I now know it was a Lyme bulls eye rash – but it went away. I also had flu symptoms about 6 weeks after, but I’d just finished working summer camp, so thought I was just exhausted.
When I found information about Chronic Lyme Disease – what can happen if you don’t get treatment straight after getting bitten by a tick – it was like reading information that could have been written about me.
I had my blood tested overseas. I was positive for Borrelia, or Lyme Disease. But not only that. When the tick bit me, it injected the Lyme bacteria into my blood stream. It also injected three other bacterias at the same time – Bartonella, Babesia and Rickettsia. These are all serious brain-affecting infections. For 15 years, all these infections were swirling around my body.
They got into every part of my body, and we believe they triggered a number of other diseases and co-morbidities. I have reactivated Epstein Barr Virus and Coxsackie B virus. I have neurological foot drop, which then caused severe Posterior Tibial Tendon Dysfunction because of the weird way I walk. I have Sensory Peripheral, Motor and Autonomic Neuropathy. I have ‘bionic legs’ and a walker – without them, I can’t walk. My legs are so bad I am the first person in the history of the brace company to smash through their indestructible braces.
My Autonomic Nervous System has stopped working properly. This affected my heart and the cardiologist diagnosed me with severe Postural Orthostatic Tachycardia Syndrome (POTS).
My brain forgets to tell my body to breathe at night time, so I have a CPAP machine to hold my airway open. I have Chronic Fatigue Syndrome and Fibromyalgia.
I eventually have found an amazing team of doctors who are willing to work with me on treating my POTS and secondary illnesses, and can treat some of my symptoms. However in Australia, I can’t access the leading tick borne illness treatment in the world, because according to our Government, these diseases don’t exist in Australia, and if they treat me, they could lose their medical licence as so many before them have.
According to the Australian Charter of Healthcare Rights, as a patient in Australia, I am entitled to the following basic rights:
- Access: a right to access health care;
- Safety: a right to receive safe and high quality health care;
- Communication: a right to be informed about services, treatment, options and costs in a clear and open way;
- Participation: a right to be included in decisions and to make choices about your healthcare;
- Respect: a right to be shown respect and be treated with dignity and consideration;
- Privacy: a right to privacy and confidentiality of your personal information;
- Comment: a right to comment on your health care and to have your concerns addressed.
I have not received any of these basic rights. If I’d received treatment back when I first started showing symptoms all those years ago, I wouldn’t be in the position I’m in now, where most days I can’t even get out of bed without passing out. Prior to stopping work, my job was working with children affected by trauma and torture. This wasn’t a high paying job, so I don’t have $35,000 to travel to Cyprus to access treatment that will keep me alive.
Ironically, I now need access to support workers, disability services, physiotherapy, OT, endless assistive technology and medical services. Long term, the cost of this to the Government will be hundreds of thousands of dollars more than if I’d been correctly diagnosed and treated early on.
I’ve paid taxes for 27 years. I think I deserve to be treated with the same respect, dignity and options as patients with other diseases.
The Senate Inquiry into what the Government is now calling “Debilitating Symptom Complexes Attributed to Ticks (DSCATT)” in 2016 said “It is undeniable that patients are suffering” and “People are unwell and they must be helped. It is the committee’s primary objective to put patients first.”
It is now six years on from that inquiry. Patients are still unwell, still not being helped and still not being put first. Instead, new guidelines have been issued which put patients in a worse position that they were in before.
No patient I know wants any special treatment for patients with Tick Borne Illness. We just want the same access to medical professionals, treatment options and respect that patients with other diseases get. We urgently need these diseases to be recognised in this country, our doctors to be allowed to diagnose and treat them without fear of retribution, be eligible for systems like NDIS/Centrelink, have proper research conducted and be treated like humans.
I know it’s hard to imagine that one little tick bite can do so much damage, so my offer to you is come and spend just one day with me and see first hand what the reality is for us.
The COVID response to me is proof that if you want to make a difference quickly that you can.
There are thousands of tick borne illness patients in Australia and we all have families and friends. We all vote. Before we do, please tell us what you are going to do to help us. It’s in your hands. We want actions, not more empty promises.
I look forward to hearing from you
Ambassador, Lyme Disease Association of Australia