Submission to the Senate Inquiry on Lyme Like disease.

Please redact my name and my family members’ names throughout prior to publication.

Submitted by

Thank you for your action. It gives us our only hope.

Firstly, I would like to thank Senator Madigan and the other Senators who have instigated this Inquiry, it gives me and the thousands of Lyme sufferers and carers in Australia our only hope.

If my Submission sounds angry, the anger is directed at the current system, and not at the Inquiry which is trying to help. My anger is deep, as an Australian who sees unnecessary suffering in our great nation, a suffering that is escalating dramatically, and my anger as a father who sees his daughter suffering immense pain and suffering, simply because of the “system”.

My submission set out the reasons for my anger, my story as a father of a very sick daughter and the outcomes that the Inquiry and our politicians have a responsibility to achieve.

SUMMARY

Why does the current system cause unnecessary hardship, chronic pain and suffering and potentially death amongst 10s of thousands of Lyme sufferers?

There is no sugar coating the question; it is proven and accepted that exists. Yet we do nothing, and people suffer and die.

Many countries recognise it, there are millions of suffers identified worldwide in countries with respected medical systems. The US CDC estimates that there are millions of sufferers in the US, there are more than 300,000 new cases each year and Lyme is the fastest growing vector borne disease in the US.i The EU estimates that are 85,000 new sufferers in Europe each yearii.

From the doctors who know and study this disease we know that untreated Lyme disease causes extreme pain, suffering and even death (and quite often suicide because of the significant pain and suffering). The suicide rate of Lyme sufferers is much higher than the national average. The impact of Lyme on a sufferer’s quality of life is more severe than Multiple Sclerosis, Congestive Heart Failure (CHF), , diabetes and many other diseases.iii

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If Lyme is diagnosed early, treatment is quick, cheap and effective. If it is diagnosed late, (and sadly the average time to diagnosis is 10 yearsiv) treatment is extremely costly, resource intensive, painful and physically disabling. There is a vaccine, but only if you are dog.

Although we don’t know the true numbers of sufferers, the best estimates are between 10s of thousandsv and 450,000vi sufferers of Lyme in Australia.

Yet in Australia, we don’t treat it. Why is that?

The only answer I have been given is “because the Australian Government does not accept that there are ticks in Australia that carry the disease, and because of this, the disease does not exist. And if the disease does not exist, then there is no need to treat it.”

The consequences of not recognising the disease are catastrophic, potentially deadly and certainly causing unnecessary pain and suffering to Lyme sufferers. The consequences of not recognising Lyme disease exposes the nation’s blood supply and organ donor programs to severe risk of infection and expose the general population to contracting Lyme disease through unsafe sex practices and tick and other bug bites.

Firstly, the Australian medical profession in general knows almost nothing about the disease, and so cannot diagnose it, through ignorance.

Secondly, I have heard many stories that large numbers of the medical profession (doctor, pharmacists and potential medical researchers) believe (whether true or not) that diagnosing, treating or researching Lyme disease has led to the treating doctor being threatened with disciplinary action by AHPRA or Medical Boards, told that their career will be ended or otherwise harassed or bullied, so the few doctors who do know about Lyme refuse to treat it, and the few researchers who are prepared to research it are ‘encouraged’ to direct their research efforts elsewhere. Whether this bullying is true or not, the fact is the perception is widely perceived to be true and it is causing people to behave in ways that are detrimental to Lyme suffers.

Thirdly, there is a huge gap in the testing process, with Australian tests being inadequate, and overseas testing which is more accurate (but not perfect) not being recognised in Australia, seemingly because of bureaucratic red tape associated with mutual recognition.

Fourthly, Medicare does not cover anywhere near the costs associated with treating Lyme disease as it is a disease ‘that does not exist’, and so to get treatment (assuming you are lucky enough to get a diagnosis) the sufferer must be in a position to fund their own treatment. My daughter’s current treatment is costing >$6,000 per month (which is more than the average wage in NSW) and it is expected to remain at this level for many years to come (10+). And recently we have just been advised to get to have the blood heat treatment overseas (cost c$30,000). This alone suggests that you would have to be in the top 2% of income earners to be able to afford the treatment, even if you had a diagnosis. The only point of financial relief appears to be when you hit the Medicare safety net, when the costs become more bearable, but still unaffordable for most. We know many people who are on the poverty line, are going bankrupt funding their treatment or simply have reduced or stopped treatment because of the overwhelming costs.

So Australia has a system that prevents diagnosis of Lyme both through lack of doctors’ knowledge/willingness to diagnose and a lack of accurate testing, and then effectively prevents treatment for the very few who are diagnosed. This is unAustralian and we should be ashamed and embarrassed. This Inquiry must stop this immediately. People are in extreme pain and long suffering, and ultimately many are dying. And for no reason!

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Illogical Lyme Logic

The logic behind the reason that there is no support for Lyme sufferers is inconsistent with current medical practice for any other disease.

The “Lyme” rationale suggests that as a person cannot contract Lyme disease in Australia, then sufferers should not be treated in Australia. But if I break my leg in New Zealand, I can get treatment for that broken leg when I return home to Australia. The Australian doctor does not send me for a test to find out whether my leg was broken playing AFL in New Zealand (which of course I will fail as New Zealanders don’t play AFL) and then refuse to treat me when I say I got a broken leg from playing rugby in New Zealand because the doctor only recognises and treat legs that have been broken playing AFL in Australia). The cause and location of my injury makes no difference to whether I need treatment, I still have a broken leg and I still need treatment.

Medicare does not deny treatment and support to people who contract other diseases overseas even if the disease cannot be caught in Australia (Ebola, Zyka, Polio, Yellow Fever, Malaria etc). So why pick out Lyme disease? It does not matter whether you can get Lyme in Australia; as an Australian I am entitled to be treated in Australia for any disease I get, wherever I get it from, whatever type of bug gives it to me or however else I contract it. Medicare even covers people who knowingly inflict injury and disease on themselves through smoking, drink and drugs, so why does it not cover people who are unlucky enough to catch Lyme disease through no fault of their own? (Ironically you can call into a “drop-in drug addict centre” and get given free syringes, but Lyme sufferers are forced to pay for their own – our family buys them wholesale in batches of a 1,000 from a friendly pharmacist who passes them on to us at cost).

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MY STORY

Background

My name is I am the father of , a beautiful, intelligent, outgoing, Christian 19 year old who has been diagnosed with Lyme and a number of related co-infections. I am married to and we have a year old son who is in his final HSC year at school.

Before I start I want to say that what you read below is the story of a patient and a family who are in the best possible position to deal with the disease and its consequences, and that despite the terrible suffering I see my daughter enduring on a daily basis, I know that there are many sufferers who have it far worse. We have a strong family, we are a well-educated family, we are able to afford the treatment, was diagnosed very early on and, as luck would have it, we happen to live in the suburb next to one of the leading Lyme literate doctors who offers unbelievable care and compassion. And we only have one sufferer in the family; we know of families where both parents and all the 3 children have Lyme. I cannot imagine how they cope.

I acknowledge that our difficulties are not as bad as many, and ask that the Inquiry should use my story to think just how bad it must be for those other families and sufferers. Reading some of the other submissions to the Inquiry I acknowledge our difficulties are nowhere near those of others, which just goes to show how tragic this entire situation is.

I do not want to dwell on the actual pain and suffering that my daughter feels, as I know that the Inquiry will have many first-hand accounts from sufferers of what they feel and my language will be wholly inadequate. But I do want to tell the Inquiry what it is like for a father of a sufferer and for the family of the sufferer, so that you can see the completely unnecessary additional stress, hardship and pain that is caused to our family (and to as a consequence) by the current refusal to acknowledge Lyme, enable diagnosis and testing and provide affordable treatment.

Again please imagine what the situation is like for those fathers/carers who are not in our position. Those who don’t have the determination and resources to get a diagnosis, those who “give up” on the medical profession or are “satisfied with” or “accept” a misdiagnosis of some other disease or a “your mad” diagnosis, those who live in rural communities where you cannot simply keep seeing multiple specialist doctors for multiple failed diagnosis, those who don’t have the means to fund their kids’ treatment and who simply watch their kids suffer and die, those who don’t live within easy reach of a Lyme Literate treating doctor and who have to split up their family to enable one parent and their child to move interstate to get treatment, and maybe worst of all, those families where the parent/carer themselves also has the disease and is trying to manage all this for their kids whilst they themselves are suffering.

The Road to Diagnosis

Over the past 2 years complained about pins and needles in many parts of her body, nothing that was really painful, mostly it was annoying. The pain became worse, and she began not to be able to concentrate. As she was in her HSC year at school she started falling behind, and she ended up getting special provisions for her HSC. Notwithstanding the pain, she did extremely well in her HSC, ranking in the top 10 in the State for one of her subjects and was accepted at to do a double degree in Design and Communication and Creative Intelligence commencing in Feb 2015. She was the life and soul of school, actively participating in many extra circular activities, an active Christian, Commanding Officer of her Unit in school cadets and academic prize winner, with a large and diverse circle of friends.

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Then one day her leg went dead. It just stopped working, for no apparent reason. We took her to hospital, where she spent a couple of days having tests, but no diagnosis was offered. Her leg fixed itself without any treatment as suddenly as it stopped working, and she returned home.

This happened again a few weeks later, and again we took her to hospital, and again she spent a couple of days having tests. Her leg fixed itself without any treatment as suddenly as it stopped working, but again we left without a diagnosis. The pins and needles became more painful as time progressed, and then one day she partially lost her vision. The same thing happened, we went to hospital, had tests and left with no diagnosis, no treatment and it corrected itself.

Of course by now we are on the merry-go-round of tests, referrals to specialists and specialist consultations with very expensive doctors. As time progresses the tests became more invasive and more frequent. Blood tests, MRIs and lumbar punctures. But still no diagnosis. Each specialist declared that “it is not something that I deal with” and referred to another specialist. She saw neurologists, neurosurgeons, infectious disease specialists and many others, each offering no diagnosis, and each simply referring her on to some other specialist. Eventually she was told that “it must all be in your mind, go see a psychiatrist”. (We now know that this process of being passed from specialist to specialist, before finally the specialists give up and the last one says it is “in the mind”, is the norm for Lyme patients.)

I can only guess what this is like for the patient. Testing is invasive and painful. You are handed from pillar to post, with no outcome, and finally just to ensure your humiliation is complete, you are told you are mad. And of course throughout the entire period (which for was more than a year) she is in increasing pain and at a loss as to why various parts of her body stop working. I am told that the average time to diagnosis is 10 years, so we were very lucky.

As a father, I see my daughter in pain. I see senior and specialist doctors run numerous invasive tests before they effectively ‘abandon’ my daughter’s care as ‘not in my scope of brilliance’ and pass her on to the next specialist with a referral being used as some sort of self-justification for not being able to diagnose illness. Finally, I see the most massive abrogation of responsibility from a doctor by suggesting it is something in her mind.

The financial cost of these numerous tests and specialists has exceeded $10,000. My wife is now taking significant amounts of time off work to help go to all the appointments. I feel helpless.

After more than a year we have no diagnosis, and no doctor has even suggested he/she is close to understanding what is wrong with

Then, one day, my wife at her workplace, a surgery, when one of the patients starts discussing her symptoms with my wife. The more the patient talks the more similar the symptoms sound to symptoms. The patient says that she has Lyme disease and is under the care of a doctor in the next suburb and “you should go and see him”. We take to see the doctor and after more tests over several more months she is given a diagnosis that she has a number of the co- infections of Lyme, but the test for Lyme itself is inconclusive, but based on symptoms the doctor strongly suspects Lyme.

So diagnosis is not the result of considered medical professional opinion and referral system, it is the result of a chance “bump into in the street” meeting with a fellow sufferer. Is this what our medical system has come to I ask?

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Our “choices”.

At this point we have some choices. Those of you who are parents or who have loved ones will understand my stress at this point. You have to pick one. There is no choice 5.

 Choice 1. If has got Lyme and has treatment. Under this choice is treated with very large quantities of very serious drugs over many years, which will make her feel much worse before she gets better and which ultimately may restore her to 90% of her original self, although she is likely to have damage to one or more organs through the treatment. will be at a high risk of suicide throughout. The cost of this treatment for is estimated at $6,000 per month. The treatment program is likely to last 2-10 years.

 Choice 2. If has got Lyme but does not get treated for Lyme because we elect not to take treatment (because of the effects of the treatment or we don’t believe the diagnosis) or we cannot afford it. Under this choice pain and suffering will increase and she is likely to die from the disease in the medium term, and will be at a high risk of suicide throughout.

 Choice 3. If has not got Lyme and we don’t give her Lyme treatment then we are no closer to diagnoses and have exhausted Australia’s medical professionals’ collective wisdom. Under this choice continues to suffer pain, with various body parts ceasing to operate randomly, unable to work or have a normal life and with no prospect of recovery.

 Choice 4. If has not got Lyme but we give her treatment for Lyme. Under this choice, we are subjecting our daughter to a terrible regime of treatment, further pain and suffering, at a serious cost. And of course we are not treating what she really has got.

We choose Choice 1 to treat for her co-infections and suspected Lyme. In fact there is no real choice, (for those that can afford the treatment).

At this stage has had to drop out of University because she is physically unable to get there and she is mentally incapable of handling the work. In addition her motor neuron function is now so reduced that she cannot hold a pencil, pen or paintbrush to do the fine work required by her course. is now sleeping 15+ hours per day, she is in pain constantly and at some times she is physically unable to bring a cup of water to her mouth. She has stopped driving and her sight is now impaired. We have to drive her everywhere, and her trips out are restricted to short shopping trips and church.

applies for a disabled person parking permit.

I buy a wheelchair for It breaks my heart. No father should have to do that.

begins her treatment, and as promised, she gets worse. Treatment includes a myriad of pills (46 pills per day), with numerous prescriptions and trips to the pharmacist. Some pharmacists refuse to supply us the prescribed drugs as they think the quantities are too large. Our friends tell us that we are doing the wrong thing, as in these quantities are ‘bad for her’. We are left deciding whether ‘bad for her’ is better or worse than ‘likely to die’ and how do you discuss this option with your friend?

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As time goes on and more tests are completed the doctor finally concludes that, based on her symptomology and overseas test results, has Lyme as well as multiple co-infections. This is a defining moment in all our lives. As dreadful as this diagnosis is, at least it is a diagnosis, and we now have a label, a tag, on which we can hang our hat. It provides certainty, it means we can tell our friends and family that has a defined thing, as opposed to “we really don’t know”. The fact that diagnosis means has 2-10 years of pain and suffering ahead seems to be a “worthwhile trade” for getting an answer. At least we don’t have to go to more specialists for more tests and we can get on with treatment. And at least we know that it is not a psychiatric illness. We think “Lyme can’t be that bad, at least it is not MS”, but then we learn differently.

We all become really angry about the “its all in your head” diagnosis from the last “specialist” doctor we saw. (The lawyer in me contemplates this doctor’s legal liability for this misdiagnosis).

Personally, my secret concern is that given that we have spent so long seeking a diagnosis, and having now got a diagnosis of an “unapproved” disease from a medical profession that denies it exists, is that we have been duped into something that has no value. I think we are like the parents of a cancer patient for whom all doctors have told the patient there is no cure and death is certain, but have just found this miracle cure of a random bunch of herbs online, and that will cure our daughter. Is this real, or is it false hope? But like the cancer patient who finds hope in that random bunch of herbs, I have no choice, the diagnosis came from a doctor, he seems like we can trust him, and if I am wrong, then is likely to die. Just maybe he knows more than the entire Australian “official” medical profession, the Australian Government and Medicare, and can help my daughter. It is only the fact that it appears that Lyme is known and treated in the US and the UK (and I can find information on Lyme on the UK’s National Health Service website) that makes me think that our doctor may just be the leader and enlightened. I hope so; prays so.

And we all become really angry about “the system” that has subjected to this process. This anger grows as we find out more. Indeed my wife is now reading everything possible on Lyme, our friends send us newspaper clippings, my parents in the UK send us information and links to websites on Lyme, and of course has a new group of friends from her IV sessions, almost all who are much worse off than she is. We meet Lyme patients who are having 20 non tonic clonic seizures a day, sufferers who go to hospital with a doctor’s referral to get an MRI test and are turned away because ‘it is a waste of this hospital’s resources’, sufferers who are ‘banned’ from public hospitals because ‘Lyme does not exist’, patients who travel from Perth to see our doctor, another whose mother and patient have left the rest of their family in Queensland and now live in rented accommodation locally simply to get treat from our local doctor, sufferers who end up in hospital and the hospital forcibly removes their picc line and confiscates their drugs that have been prescribed by their Lyme-literate doctor.

In our world doctors are now classified into two; “Lyme Literate” and everyone else. We hear from our new Lyme patient friends and doctors of the treatment that Lyme patients get from non-Lyme Literate doctors and this creates a real evidence based fear. What happens if gets sick and needs to go to hospital? Will she be given treatment, will they take her drugs away? We create an emergency plan for dealing with the possibility of needing emergency treatment. The plan revolves around getting to our Lyme Literate doctor at all costs. Going to hospital is the very last option for a Lyme related medical emergency. Our plan includes taking the ‘minimum necessary’ number of pills (just in case they get confiscated), and the Lyme Literate doctor’s phone number.

And as I create this plan I ask in what civilised country is it right to have ‘going to hospital’ as the LAST resort in a medical emergency?

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As the treatment progresses, is given multiple injunctions. Her arms begin to look like she is a drug addict. ability to physically swallow becomes a problem and she is unable to take the large number of pills that have been prescribed. The doctor now prescribes a picc line, (which is a permanent cannula that the doctors can insert drips into without having to inject her arm separately each time). The picc line is used to enable drugs to be administered intravenously, directly into her heart. The doctors instruct my wife how to keep it clean and so now we are beginning to manage health at home, having to administer some fluids and ‘flush’ the picc line to keep it clean. The next stage of the treatment is for my wife and I to administer some of the supplements at home using an IV drip. We are told we must buy the equipment (IV drip, heart monitor, syringes etc) and an epi pen ‘just in case’. As my wife is telling me how to use an epi pen, I nearly stab myself with it by mistake, nearly causing me to have a heart attack.

At this stage is going to the doctor’s surgery 3-5 times a week simply to receive drugs and supplements through the picc line; her “IV sessions”. I have not been to one of these myself, but I hear the reports. Essentially there are a group of Lyme patients, some worse off than some better off than all in a small room, some on beds, some in chairs, all hooked up to IV bags, all getting drugs/supplements pumped into them via picc lines. It is quite normal for more than one of these patients to be having seizures during their sessions, or to be crying in pain. All the patients sit and watch them as this happens. If there are lots of patients at any one time then there is no room for parents or carers, who must sit in a different room. Nurses attend to the IV patients with love and care, but can only really provide comfort, and sometimes pain relief, to patients who are having seizures or who are in pain. An IV session can last 4-7 hours depending on how fast your body is able to receive the fluid in the drip. Of course, whilst the patients are in the room they swap stories about their illness, their useless lives and the pain and suffering they endure. I worry about the impact of this on my daughter’s mental health.

The picc line hangs out of arm permanently, and she goes online to buy a ‘picc line sleeve’ to try and hide it from sight.

Managing medication, medical bills, transporting her to and from IV sessions and dealing with medical emergencies has become a full time job, and my wife is forced to give up work. researches the internet for hours looking for information on Lyme and the co-infections, looking for generic versions of drugs that can be bought on line to save money, checking active ingredients and contra indications, writing up schedules of medications on a white board at home and trying to manage day from the time she wakes up to the time she goes to sleep, particularly so that she take the scores of pills and IV sessions every day at the right time. Medication and its administration is so complicated that only my wife understands what is really needed. She has become a walking encyclopaedia on Lyme and medical needs. As the task gets more complicated I realise I cannot possibly keep up, and need to play a different role. Realistically I realise that my role in the family now is reduced to 2 things (i) to be the ‘rock’ and foundation of the family to provide support and care, and (ii) work to fund the expense of treatment. This last point becomes an open family talking point as the bills mount up. asks me about my life insurance coverage and what happens if my business fails. And of course the more I work, the less I am at home to fulfil the other role and the less I know about illness and her health.

And all the time we have another child, who is doing his HSC. We really need to provide him with support during one of the most important years of his life.

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By November last year, it is clear that my wife needs a break. She is physically and mentally exhausted. We agonise over whether we can leave We consult with doctor, who says it is manageable. We select a destination based on how quickly we can return home. We source travel insurance that will pay out if we end up cancelling because a “non-travelling family member becomes ill”, we select a hotel based on its cancellation policy, we arrange for a trusted friend to stay with for the period we are away. We almost cancel multiple times. In the end we go to Fiji for 12 days in late December/early January. Fortunately nothing serious goes wrong when we are away.

On the Wednesday after we get back, has her first “Lyme seizure” at the doctor’s surgery. During this two hour episode she is unconscious and is having convulsions, a non tonic clonic Lyme seizure, (which is different to an epileptic fit). When she comes round she is in extreme pain and cries a lot. Practically there is nothing the doctors can do for her apart from manage her pain and monitor her vitals. And even managing her pain is a complex problem given the number and quantity of pain relief medication that she is already on. Fortunately she is at the doctors when this happens. After the pain subsidies, we are allowed to bring home.

The following day, has another seizure at the doctor’s surgery and the pain, treatment and release are repeated. We put the seizures down to the introduction of a new , and are assured by the doctor that this is a ‘good thing’ as it shows is responding to treatment.

The following day my wife has taken to Hospital in , NSW to see one of IV session friends who has been admitted to ICU in a serious condition. Whilst she is visiting ICU, has another seizure. The doctors see this and admit to Accident and Emergency. I am called at work and race to the hospital.

I find having a seizure, shaking violently and moaning. She is unconscious. This lasts a couple of hours, and the duty doctor is monitoring vitals and we provide a description of her current treatment and medication. There are silent gasps as we go through the list. The duty doctor readily admits that whilst she is ‘sure will not die in the next 24 hours’ she has no idea what to do. Indeed she tells us that there is no one in the hospital who knows anything about Lyme (apart from one doctor who is on leave). She calls for help from the infectious diseases specialist, with no outcome.

After a couple of hours regains consciousness and is in the foetal position crying from the pain that she is in. The senior A&E doctor comes into see On hearing of her circumstances and her medical history he makes his official diagnosis, “This is probably just an emotional reaction to seeing her friend sick in the ICU”. He goes on to explain that whilst he is “curious” (his exact word) as to her pain he offers no support, no care, no medication and frankly he gave the impression that he could not give a toss. He has however also decided that since is not going to die in the next 24 hours he can get her out of her A&E bed and into some other part of the hospital. The duty doctor is a little more sympathetic, explaining that she is from the UK and “things are different there”. She provides some pain relief and some hours later the pain has subsided we take home.

Over the next two weeks has more seizures and my wife and I decide we cannot leave without adult supervision at any time. Our lives become even more difficult to manage as a result.

And so this is now our present situation. is sick and in pain, she has IV treatment 3 times a week for 4-7 hours each time. She remains remarkably positive and her Christian beliefs are providing enormous comfort. She is now awake more of the day than she used to be, and with the assistance of a wheelchair can now be ‘out of bed’ for reasonable parts of the day. Other than this she watches television or lays in bed. Often she does not want any company, which given that this is

9 of 13 all I can seemingly offer to her, makes me very sad indeed. There is a glimmer of hope that she has turned the corner and the treatment is working. We are now told she should go to Malaysia for further blood heating treatment.

My wife and I are OK with managing sickness, but are worried about the impact on our son, who obviously needs our attention and guidance during his HSC year.

I am under pressure to work harder and put in longer hours, to ensure we can afford the ever increasing medical bills. But of course if I work longer hours then I cannot also be looking after which puts more pressure of my wife.

We remain angry with the system that allows this suffering and pain, without so much of an apology. We start encouraging our friends to write to the Inquiry.

Still probably only another 9 1/2 years to go…..

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OUTCOMES FROM THE INQUIRY

It is essential that this Inquiry results in some immediate changes that are so desperately needed by sufferers of Lyme and related diseases. The first thing the Inquiry needs to do is to stop the current sufferers suffering any more.

STOP THE CURRENT SUFFERERS SUFFERING

1. The disease needs to be publically and professionally accepted: a. The Chief Medical Officer and other medical professionals need to publically, unequivocally and loudly accept that Lyme and related diseases exist in Australia and should be treated in Australia irrespective of how or where the sufferer contracted it. b. It is OK to say that we don’t know everything about the disease, but it must be accepted as existing and must be treated.

2. Medical treatment needs to be available, without discrimination: a. Changes need to be made so that doctors can treat Lyme and related diseases, with treatment protocols that are drawn up by Lyme literate doctors who have a proven success in treatment of Lyme and related diseases. b. Treatment should be available whether the sufferer has contracted the disease in Australia or abroad, and irrespective of how it was contracted. c. APHRA and Medical Boards must stop harassing doctors and other medical professionals from treating sufferers with Lyme and related diseases, including with large doses of antibiotics that are prescribed over the long term, where the treatment regime is consistent with the newly drawn up treatment protocols. d. There must be a wide-scale publicity campaign to alert potential sufferers of the symptoms of Lyme and related diseases and to encourage them to seek a diagnosis from a Lyme literate doctor.

3. Accurate and reliable testing a. Harmonise the testing process so that testing is done consistently, professionally and looks for the broadest spectrum of Lyme bacteria and related bacteria, including those found in Australia or overseas. b. Make testing more readily available in Australia and affordable.

4. Treatment needs to be affordable a. Changes need to be made so that medical treatment for Lyme and related diseases is affordable and is fully covered by Medicare and private health insurance. b. Changes need to be made to the PBS so that the medicines and medical equipment (IV poles, wheelchairs, drips, syringes, epi pens etc) that are prescribed to treat Lyme are covered. c. Determine ways to reduce the cost of testing. d. Make the blood heating treatment available in Australia (I understand the Hospital has the equipment).

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STOP MORE PEOPLE FOR BECOMING SUFFERERS

5. Prevention and Early Diagnosis a. Doctors need to be educated so that they recognise and can diagnose Lyme and related diseases. b. We must stop the situation where sufferers visit multiple specialists prior to being told that “they are mad”, prior to getting to a diagnosis of Lyme. This is one of the worst aspects of the condition, and whilst it was difficult enough for us Sydneysiders to go from one appointment to another waiting for test results in between, it must be impossible for Australians who live in regional and remote areas. c. Broadcast a public awareness campaign identifying simple measures to prevent infections (Slip, Slop, Slap, Spray???, Safe sex campaigns??? Bring back the Grim Reaper – yes it is that bad). d. Ensure that workers in high-risk jobs (forestry workers, workers who are exposed to ticks, fleas and other potential carriers) are protected and educated. e. Broadcast a public awareness campaign to let the public and doctors know that a simple 6 week course of antibiotics taken shortly after being bitten/contracting the disease is likely to prevent chronic Lyme disease and all the pain and suffering that this entails. f. Make Lyme and related co-infections a “notifiable disease”.

6. Fund research a. Fund research in the causes of Lyme and related diseases, particularly to determine whether there are other high risk infection risks, e.g. sexual transmission or transmission from mother to child. b. Fund research into treatment options. c. Collaborate with other research worldwide.

LOOK AFTER THE PUBLIC GOOD

The public purse

As we all know there is a simple, cheap, low risk and highly effective treatment of Lyme patients available, a 6 week course of antibiotics given shortly after infection. So it must be cheaper to do this than to let Lyme sufferers spend on average 10 years visiting specialist after specialist before being diagnosed, and then having to fund a decade or more of expensive treatment. Research shows that chronic Lyme sufferers visit their doctors and healthcare professionals 5 times as often as the general population, are taken to A&E in hospitals twice as often, are twice as likely to stay overnight and are nearly 6 times more likely to receive or pay home care visitsvii.

There have been a number of vaccines invented by GlaxoSmithKline (licenced in 1998 in the US) in and possibly Valena VLA 15viii. Explore their effectiveness and use. Apparently you can get a vaccine against Lyme, but only if you are a dogix.

Contributions to society

Lyme is indiscriminate in who it infects, and can infect anyone. Everyone who is infected quickly becomes unable to work or contribute to society. Research shows that 42% of chronic Lyme patients have to give up work and a further 29% reduce their hours or change rolesx. And their

12 of 13 carers have to give up work and also cease to contribute to society. They claim benefits (although I have heard of cases where benefits are often denied if “Lyme” is the cause of the disability). And the longer Lyme is undiagnosed and/or untreated, the longer period that the sufferer and the carers cannot contribute. Each becomes increasingly dependent on welfare, handouts from charities, families and friends. Many go bankrupt.

RESPONSIBILITY TO STOP THE DISEASE SPREADING

Perhaps one of the most astonishing things about the current situation is that tens of thousands (but almost certainly many times more) of Australians have Lyme disease, which is seriously debilitating and potentially fatal, that the CDC has acknowledged as the fasting growing disease in the US, and yet:

 We are letting the sufferers suffer and die untreated;

 We are doing nothing to identify the risks to the broader population, to the supply of our blood stocks, to the supply of our organs, and those who receive them;

 And, although there is increasing evidence to show Lyme can be transmitted by unprotected sex or passed from mothers to their children nothing is being done to educate the nation as to the risks and measures that can be taken to avoid it. Contrast this with the education, research and resourcing that has gone into HIV related issues.

And why?

Because of the out-dated and medically irrelevant position that “there is no tick in Australia that has been found to have Lyme disease”. Who cares? If an Australian is sick, they are entitled to be treated, at a cost that is affordable. They are entitled to have their suffering and pain stopped, and they are entitled to be treated with dignity and the best of our medical resources. Apart from this being the Australian way, it is a fundamental human right.

And this Inquiry has a duty to make that happen, immediately.

And if you do, you may just save my daughter’s life, and many 10s of thousands of others too.

i http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html ii World Health Organisation 2006. Lyme borreliosis in Europe: influences of climate and climate change, epidemiology, ecology and adaptation measures By: Elisabet Lindgren Thomas G.T. Jaenson. Section 1.2 iii Johnson et al. (2014), Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ 2:e322; DOI 10.7717/peerj.322 iv LDAA Parliamentary Briefing – March 2016 “Lyme Like disease in Australia: Issues and Opportunities”. v Chair of Australian Complex and Infectious Diseases Society (ACIDS) presentation to the Friends of Lyme meeting in Canberra March 2016. Pg 3. vi LDAA Parliamentary Briefing – March 2016 “Lyme Like disease in Australia: Issues and Opportunities”. vi Chair of Australian Complex and Infectious Diseases Society (ACIDS) presentation to the Friends of Lyme. Pg 2 vii Johnson et al. (2014), Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ 2:e322; DOI 10.7717/peerj.322 viii http://www.digitalproducer.com/article/VALNEVA-to-present-at-the-16th-World-Vaccine-Congress-in- Washington-DC-4352140 ix http://www.vetstreet.com/care/examination-and-lyme-disease-vaccine-for-dogs x Johnson et al. (2014), Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. PeerJ 2:e322; DOI 10.7717/peerj.322

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