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Wednesday, 9 November 2016
Page: 2382


Senator MOORE (Queensland) (17:47): I want to add my comments in response to the report that the government has provided and point out how impressed I am with the speedy turnaround in this. In my experience in this place this is the quickest response we have ever heard from the government on any report that has been presented. If you check all those community affairs reports that have gone and are sitting somewhere waiting for a response, we acknowledge it with deep appreciation without saying anything more.

In making some comments about this response, I do want to put on record the hard work and commitment that previous senators John Madigan and Dio Wang showed in working to ensure that there was an agreement in this place to move forward with an inquiry into this issue. At times there has been some controversy around this particular condition, and there was some reluctance in the initial stages as to whether it was an appropriate time or an appropriate way to spend Senate resources by having such an inquiry. The work that has been done indicates and vindicates the work of those two senators. It is just a shame that they are not here to be able to hear this response from government, but if I know them both they are very keen to retain these issues and to retain links with the people from the Lyme Disease Association of Australia.

Senator Siewert mentioned a number of the things about which I wish to make comments on as well. There are a couple of particular points I want to take up. One is recommendation 3, which was about the government needing to have engagement with people in the medical profession and also with the people who represent and are part of the many people in this country who feel that they are definitely the victims of Lyme or Lyme-like illness. That was one of the core recommendations that came out of this preliminary report because we felt that there had been a disconnect between the government, the Department of Health and the people who are working in the area of people who are genuinely ill.

I do not think that anyone who has been involved in the first committee or the second one that we have taken up can have any doubt that the people with whom we are meeting and the people we are listening to are not well. In our inquiry only last week I actually made the statement that I believed that there was goodwill and an acknowledgement of the illness. I have to admit that there continues to be genuine scepticism and concern amongst people who are part of the Lyme Disease Association of Australia and other groups about whether this concern and goodwill is in fact accurate. As long as we have this disconnect and lack of trust and respect, we are not going to be able to move forward. If this inquiry can achieve anything it must aim to achieve respect for the people who have come to us, explained how unwell they are and talked to us about the lack of respect, the lack of treatment and the lack of acknowledgement they have received by the medical profession in this country over many years. To me, that has been the most confronting element of the work on this committee.

Naturally, I am very pleased with the acknowledgement that there must be continued research in the area. Senator Siewert talked about some of the amazing work that has been done at Murdoch University in WA. At the University of New South Wales and, I believe, the University of Sydney there are also groups of researchers who are looking at tick-borne disease.

I think that maybe at this stage there has not been a complete focus on the issue of Lyme, but there is an acknowledgement that Australian ticks may well have pathogens which can cause illness. They are working to identify clearly what those are and also looking at what the impacts could be—and not just on animals. As you would know, Mr Acting Deputy President Back, most of the work in Australia at this stage has been in the veterinary area. Indeed, I think, without being a medical professional or a scientist at all, the probability is that there is something that is making people unwell.

Certainly, one of the things our committee talked about is the absolute need to continue funding to allow this research to continue—research at the national level being able to be introduced into the international fora. There are significant fora around the world looking at these issues. So this is not peculiar to Australia; this is an international issue. There are people who are concerned about tick-borne illness around the globe. This work must continue and Australia must have a role in that.

I have taken some hope from the government response to recommendation 3, that the government, through the Department of Health, will renew its engagement with the clinical reference group. Up until this point we believed that had ceased to exist. It had a short lifespan that ended in 2015, but we are very pleased to see that the government is going to reinvigorate this group and also maintain information and engagement with relevant medical education meetings and conferences to inform and to engage with more research.

That is the missing link. We now have some knowledge about a disease called Lyme which was identified in the United States. We have some knowledge about variations of this disease across elements of Europe. There continues to be a lack of 'empirical' evidence of actual Lyme disease in Australia, but we know that there are people who are unwell. And the range of symptoms and the impacts of this condition are vast. This is not something that is an irritant; this is not something that causes flu-like symptoms; this is a disease which has symptoms which are crippling. Some of the stories we have been told as people came to us to tell us about the extended issues of their illness are extremely disturbing and confronting. So I congratulate the government for actually saying that they will restart this conversation with people who care deeply about this issue and that they will give them the respect and acknowledgement they deserve.

I also think this issue around education is most important. We know that there has been some attempt on the website and also through information data sheets to raise awareness of people about the impact of tick bites—not calling it by any name but just indicating for Australians, both here and when travelling overseas, to be aware that when ticks bite you they can have an impact. It is just to raise that awareness and to raise the concern. I think that in many cases Australians in some areas of our country are fairly used to being bitten by ticks and just take it in their stride. It needs to be better understood and people need to take effective protective action to ensure that they will not be bitten.

The department have said that they have raised that issue and that they have put this data on their website. We believe that should be a more proactive strategy. We believe that it is not just good enough to say, 'We've got a website and we tell people this is important.' As a result of this inquiry I hope that there will be a more proactive strategy across states as well, because this is an issue that impacts on state governments—particularly their health departments. But we need to do better in that space.

I am very optimistic that when we complete the second part of the report on this issue we will have a better understanding in our community and I hope a better understanding in the Department of Health so that we will be able to treat people with respect and probably be able to move forward together to ensure that we look at illness, rather than names.