Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I move:

That this House:

(1) notes that May was Lyme Project month, a time when the Lyme Disease Association of Australia raises awareness and funds to provide ongoing advocacy for people living with Lyme disease;

(2) recognises that Lyme disease can be debilitating and have a devastating impact on the lives of people living with it; and

(3) works with the Lyme disease Association of Australia to accept Lyme disease as a disease, undertake research, develop a national plan to collect statistics and develop treatments for people living with Lyme disease.

Lyme disease is an infectious disease caused by bacteria carried and spread by ticks. This is a disease that does not receive the acknowledgement or recognition in Australia that it should. The disease is becoming a global epidemic. It is currently affecting the lives of thousands of Australians, many within the electorate of Shortland. Lyme disease can be caused by a bite from an infectious tick, and there is a growing body of evidence—this adds to it—that it can also be transmitted by fleas and mosquitoes, transplacentally from the mother to the foetus, and through unprotected sex.

Lyme disease is a disease that is having an impact on many Australians, and it may mimic other diseases. Many Australians with Lyme disease spend years in the Australian medical system being misdiagnosed, while the pathogens infect their body and have a chance to propagate and cause damage. It is really important to be able to identify Lyme disease early and then deal with it. Australians are getting sick from tick bites, while local, federal and state governments are refusing to acknowledge the Lyme pathogens. Australian medical practitioners are not telling patients who were bitten by fleas in Australia that their symptoms could possibly be Lyme disease related. A recent study by Murdoch University announced in late June this year found Lyme pathogens in Australian ticks, which supports a growing number of historic studies that have found pathogens in Australia. Governments are denying that Lyme disease is in ticks in Australia, but this research has shown that it does exist. Lyme disease can be eradicated if the affected person takes antibiotics for a prescribed period as soon as possible after they are bitten. Not acknowledging and not treating Australians with Lyme disease is having an enormous impact.

One constituent wrote to me:

There is no use promoting a free hospital service—this is what a Lyme disease sufferer said—if they cannot get the support that they need. I know that this has been debated over a long period of time, but pathology tests must change and doctors must learn more about Lyme disease. I believe that we need to deal with Lyme disease and think of how we dealt with HIV and AIDS in the beginning—this could be similar to that. People are travelling overseas to get treatment because they are being misdiagnosed back home.

I would like to spend a little bit of time talking about an email I received from a constituent who was a public servant working for the New South Wales National Parks and Wildlife Service. She contracted the disease through her work, and she was one of seven National Parks and Wildlife Service staff that have succumbed to the disease. One of her colleagues, Natalie Young, was medically retired from the New South Wales National Parks and Wildlife Service because of the disability she suffered. She won her appeal with the Workers Compensation Commission, which recognised the fact that her illness was caused by a bite from a tick with Lyme disease. The constituent that wrote to me said that she counts herself lucky, because her treatment costs have been paid for by her employer and are being supported by her workplace.

I have to conclude by saying that I am disappointed that no-one from the other side is speaking on this—and I say that not in political terms. I have been contacted by Sharon Whiteman from the Lyme Disease Association of Australia. I know she has been contacting members on the other side of the House, and she has told me that the National Party is championing this for her. Why aren't they here speaking on the motion? (Time expired)

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I thank the member for moving this motion. Is there a seconder?

Stephen Jones (Throsby, Australian Labor Party, Shadow Parliamentary Secretary for Regional Development and Infrastructure) Share this | Link to this | Hansard source

I second the motion.

It is a pleasure to follow the member for Shortland. I know she has been a champion on this issue and I know, Mr Deputy Speaker Irons, that were you not in the chair you would probably take the opportunity to speak on this motion as well. As the chair of the House Standing Committee on Health, you were very agreeable to the proposition which was put before that committee—without giving anything improper away—of the committee holding a round table of experts and interested advocate patient groups into the existence of Lyme disease in Australia. I am pleased to say, as I am sure the member for Shortland said, that on 18 September in Parliament House we will be conducting such a round table. I think that is an important opportunity to shine a bit more light on what is going on here.

Lyme disease is an infection transmitted by the bite of ticks—we know that—particularly ticks which are carrying the Borrelia burgdorferi bacteria. The effects of the infection can be long term and disabling unless they are treated and treated quickly, typically with a course of antibiotics. The name, incidentally, derives its name from the town in Connecticut where the disease was first discovered in 1975; members of the House might be interested to know that. It is also present in many other areas—temperate regions—across the globe, including in Europe, Canada and North Asia, where a wide variety of the Borreliabacteria exist. Several species of the Ixodes tickhave been distributed and have been discovered throughout these countries and in North America as well. We know that these particular types of tick also exist in Australia, and I will have more to say about such discoveries and the incidence of this disease in Australia.

As the member for Shortland has pointed out, there is some contention about whether the bacteria exist in a native form here in Australia. But what there is no contention about is whether the disease actually exists and whether there are people in Australia who have contracted the disease—absolutely, there is no contention about that. Indeed, the capacity for them to get the sort of clinical attention and treatment that they need is, in fact, being undermined by the lack of certainty within the medical and scientific community about the existence of these bacteria and the ticks which bear them, which then goes on to influence the most appropriate forms of clinical practice and the distribution of knowledge around the most appropriate forms of practice.

Critics and patient advocates argue that Borreliado exist here. They are very critical of what they call a flawed 20-year-old study which has pointed the other way. They say that there is also evidence to suggest that these ticks, which bear the bacteria, do exist here in Australia. Indeed, they gain some heart from a recent study which found the existence of a Borellia-type bacterium within a native tick which was extracted from an echidna, and they say that that points to unequivocal evidence that the bacteria are in existence here in Australia.

I turn now to government action to date. In 2012 there was a clinical advisory committee on Lyme disease, which was established to look at evidence around Lyme disease. It was asked to provide advice on the extent of the disease in Australia, best-practice diagnostic testing and the most appropriate forms of treatment. The CACLD first met in March 2013 and agreed on the need for further research; however, there were many different views on the committee, and the committee was, unfortunately, disbanded in July 2014. We do not know why it was disbanded. Indeed, the establishment of a health committee round table, getting together all of the people who have an interest with some of the members from that CACLD involved may shed some light on why this committee, which was charged by the federal government, was disbanded and on how we can take this issue forward.

In the time remaining to me, I would say that it behoves all of us, as parliamentarians, not to substitute our knowledge for that of the medical and scientific experts. But it also behoves us to shine a light on where we think there are gaps in our knowledge, and it is certainly true that the things that we focus on are also the things that the community and our scientists and our medical experts will focus on. I commend the motion to the House.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

Mr Deputy Speaker, I seek leave to make further contribution to this debate without closing it, and, in doing so, I acknowledge the Lions Association whose members are here in the gallery today.

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

Is leave granted?

Andrew Nikolic (Bass, Liberal Party) Share this | Link to this | Hansard source

Mr Deputy Speaker, given the member for Shortland's intense interest in this matter, which I respect, leave is granted.

An honourable member: I thank the government for allowing the mover to speak, with the speaker who was supposed to be here being absent. But I would like to personally thank the government whip here for allowing this member to move this motion again.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I would like to give my personal thanks to the member for Bass, because Lyme disease is a disease that has impacted on the lives of many Australians.

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I now call the member for Shortland!

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

by leave—I start my contribution by thanking the member for Bass for his generosity in allowing me to speak again to this private member's motion. It is really important that Lyme disease is recognised in Australia. It is really important because it is having an effect on so many people throughout the nation. In the Shortland electorate I have been contacted by at least 20 people whose lives have been impacted on by Lyme disease. I also thank the Lyme Association for the extra information that they have provided me with. I acknowledge that May was Lyme project month—something I did not do in my original contribution to this debate. I am really pleased that the health committee has agreed to hold a roundtable about Lyme disease on 18 September in Sydney. I think we will get a lot of information that will lead to this debate being taken forward. As the member for Throsby said, I know that you would be here speaking on this debate if you were not in the chair, Deputy Speaker Irons, because you are passionate about all issues of health. I know that when we look at the issue we will get a complete understanding.

I visited one family where the mother had been living with Lyme for quite some time. She was unable to do the most basic day-to-day things. Her husband showed me the cabinet with all her medicines in it—the medicines that she had to take on a daily basis. She was taking up to 20 medicines a day, over time. They had a small business and he was trying to continue with the business without her input into it. The children in the family had taken on the caring role. There was very little that this constituent could do, because of the impact that it had on her life. I have been contacted by mums of children who have Lyme disease. I have been contacted by other constituents who have told me about the trauma that they experience when they turn up at an accident and emergency department only to be told that there is nothing wrong.

The misdiagnoses that take place cause enormous hardship and problems for the person. It is not only the physical aspects of living with Lyme that are a problem; it is also the psychological aspects that are associated with it—not being able to perform the role that you have performed over a long period of time, not being able to work, which has a financial impact upon a person's life and that of their family, and not being able to enjoy the things that everybody has the expectation they will be able to enjoy. Add to that the simple fact of misdiagnosis and how you have to adjust to that.

People are being told that they have motor neurone disease or Parkinson's disease, then finding that those diseases are progressing and finding that the symptoms have changed. Finally you would find a doctor who takes you seriously, understands and knows about Lyme disease and enables you to have the right sorts of tests to determine whether you have Lyme disease. Quite often the only way that a successful diagnosis will be made is if the pathology test is undertaken overseas. Pathology in Australia does not get to the issue, does not look at it properly. We need to really recognise that the Borrelia infection does exist and that it is transferred by ticks, and understand that it is having an enormous impact on the lives of a number of Australians. (Time expired)

Steve Irons (Swan, Liberal Party) Share this | Link to this | Hansard source

I thank members for their contributions. I would also like to take the opportunity to acknowledge the presence of the Lyme Disease Association guests here in the chamber and would encourage them to continue their fight and to look at some outcomes from the adhesive arachnoiditis inquiry we held, which has furthered the cause of that particular issue.

Debate adjourned.