Claire Moore (Queensland, Australian Labor Party, Shadow Minister for Women) Share this | Hansard source

Taking up from where Senator Lambie finished in her contribution, I think it is very important that we as a committee and we as a parliament accept that we have come a long way on the discussion of—I am hesitant to use the term 'Lyme'; I think one of the messages of our committee inquiry has been that the concentration on the definition has actually caused movement away from looking at the real issue. And the real issue is acknowledging that there are people in our country who are ill and there are people who are expecting that there will be respect and treatment for the condition that they have. But unfortunately, because so often the terminology is 'Lyme', you find yourself slipping into calling it 'Lyme', 'Lyme-like', 'classic Lyme' or the other terms that have been used.

As Senator Lambie said—and Senator Siewert said it as well—the time to act is now. But I also want to add that I think that if you compare where we were in this discussion six months ago with where we are now, there has been considerable movement, although certainly not at the speed at which many people hoped for. But I remember very clearly at Senate estimates in this place when any issues were raised about this condition there was a blanket refusal by the department and by the medical profession as a whole to even acknowledge that there was a condition that impacted so deeply on people and that was caused by tick-borne infection in Australia. We were subject to long explanations about how this condition started overseas, how the testing regime operated, and acknowledgement that there was indeed a condition called Lyme that had been identified in parts of America and in Europe.

In fact, we sat through extensive conversations about this, and still, at this stage, we have evidence from our committee inquiry that anyone who has exhibited symptoms and had testing when they said they had been bitten by ticks overseas has been given the acknowledgement that they would be suffering from a Lyme or Lyme-like condition. However, of the number of people who came to see our committee, the real point was made by the people who came to tell us about their condition, their pain, their suffering and their frustration when they had never been in the overseas countries but knew that they had been bitten by ticks in Australia. We had so much evidence, all of which is on record, and I really encourage people who are interested in this issue to go and look at the evidence we received and hear the response from very many people who felt not only that they had been dismissed by the medical profession in this country but also that they had been rejected, discriminated against and treated without any respect at all. As Senator Lambie said, that causes shame to all of us.

What we have seen in the I think six month from when we started pushing on this issue recently—although the issue has been around in the Community Affairs space for a couple of years—is that there has been significant movement, which was quite evident in the evidence before this extended committee inquiry and also in the report that we are bringing down today. I want to pay credit to the secretariat of the community affairs committee, who often go unrecognised for the skills that they have; both in handling the range of people who come to see our committee, and building relationships with them, talking to them and understanding their needs, and also in the presentation of reports such as the one we are presenting today.

I think this report really highlights the areas of difference, and also highlights where we can take some action. These are not monumentally large steps. No-one claims that we have solved the problem by producing this report, but I think there has been a movement towards people at least acknowledging the medical issues and the concerns, and also some movement within the medical profession—although, in this case, I would like to say that this movement has not occurred in the AMA, who have continued not to respond to the questions the committee have put to them. But there has been a movement towards a willingness to at least discuss things, to acknowledge that there are issues there that we can work on, and to give the people who have exhibited horrific symptoms, which they believe are linked to being bitten by ticks, an acknowledgement that their conditions are real, and that they are not hysterical. They need to have some response from our medical and research bodies in Australia.

The recommendations in this report about which I am most pleased are, firstly, the recommendation which talks about clinical trials, finding a clear indication for clinical trials on this condition and for effective treatment protocols, and acknowledging that this is a medical issue; not a psychological issue, not a psychiatric issue, but a medical issue. The recommendation to have those clinical trials raises the issue to another level, and I truly hope that this recommendation will be taken up. Secondly, the ongoing clause that we put in the report for scientific, well-resourced research projects which allow an acknowledgement that there may be—and I think, personally, although not being a professional in this area, are—reasons which link ticks in Australia, and the pathogens found in these ticks, to people's illnesses. There is a range of recommendations, but they are the ones which I am most hopeful will move this discussion to another level.

I am also very pleased that our report was structured starting with the title, 'Patients first'—that is, I am pleased that, in the structure of our report, we have put those people first—the people who have agitated and demanded and made their voices heard about why this issue should be on the agenda—which is indeed where they should be. Those people should be the No. 1 focus of our response.

Senator Lambie and Senator Siewert have both spoken about the bravery, the honesty and the extraordinary courage of the people who came to give us evidence. Their stories of their illnesses, their stories of the impact on their families, their stories of family loss when people have been driven to suicide because of the conditions they had—all of that was shared with the committee. I make the point that these people have raised their voices, and we have no right not to listen. In fact, there should be no question about the fact that there must be action. I am very hopeful with this particular report that we can move forward. I seek leave to continue my remarks.

Leave granted; debate adjourned.