COMMITTEES – Community Affairs References Committee Government Response to Report

Senator REYNOLDS (Western Australia) (17:48): I too rise to thank the government for their response on the Lyme-like disease inquiry. It’s not very often that you get two reports in a row in this place where you have Senator Siewert and myself in thunderous agreement and in support of committee recommendations. It has been a pleasure to work on the Community Affairs References Committee. We deal with so many heartbreaking and intractably sad issues. It’s wonderful to see that, almost inevitably, we come up with bipartisan reports. It gives me particular great delight to read the government’s response to this report. I also participated in this inquiry before and after the last election.

It was an utterly devastating experience listening to the personal accounts of those people who are clearly desperately ill, their families and their carers and those who had survived suicide attempts and the families of those members who were successful in committing suicide. There was the agony of two things: the agony of their illness itself but also the agony and the trauma in being so sick but not having anybody believe that they were sick and treating them as psychiatric patients or treating them in many other different ways. This forced some very sick people and their carers to go to sometimes hundreds of doctors here and overseas to find a diagnosis and to find treatment. It was utterly heartbreaking.

Even though an election interrupted the course of this inquiry, Senator Siewert and I and other senators on the committee got to the point where we produced a report. As Senator Siewert said, it has been a very long and very torturous process for those people who have made submissions and for those who followed the course of the inquiry so closely. While it has taken quite a few months for the government to formally respond, I am just so happy for the thousands of people who have debilitating illnesses which may or may not be classic Lyme disease that the government of Australia and the Minister for Health has said, ‘We have heard you and we believe you.’ Those are profoundly important words to these sufferers and their families. I think it’s the first way in starting to change the way that these patients have been treated, not treated or maltreated by the medical profession in particular.

It seemed to me that there was some form of Stockholm syndrome or hysteria with the medical practice where, if anybody said, ‘I’ve been bitten by a tick,’ or ‘I may not have been bitten by a tick but I have a bullseye rash,’ or ‘I have symptoms which may be this’, they were immediately treated by so many medical professionals as hysterical, as mad, and requiring some form of psychiatric treatment. The medical profession itself, with the leadership of the AMA, must take a fresh look at these patients. Undoubtedly some of the people who had been overseas will have classic Lyme disease, but, as we heard in the evidence, there are many other forms of vector-borne diseases that it could be—but, again, the research has not been done. We heard that, because of the way patients were treated, quite often they weren’t treated for other diseases and illnesses that could have similar symptoms. So people may have had MS or other diseases which the medical profession never truly looked into.

Senator Siewert has gone through the government’s position on this. I thank the minister and his staff, who have been so engaged in this in genuinely looking for a way forward and to working and sometimes pushing their own department to arrive at this position. But I would ask all who get involved in the roundtable early in the new year to come to this with a fresh approach. Put aside labels, put aside prejudices, put aside assumptions about what this may or may not be. Go to that forum with the intent to have a look at the symptoms that these people present with, listen to their stories and start a fresh diagnosis. It might be that in the early months and years more effective treatment can be provided to ease pain and to make the quality of life better, but there is no doubt that more research is required to actually identify what these illnesses are, what the pathogens are and what the bacteria or the viruses are and to then start finding effective treatments for these people.

In conclusion, I thank all of my colleagues and I again thank Senator Siewert for her tenacity and her leadership of this committee and of this inquiry. This inquiry, this report today and the government’s reply to this report is something that I think all of us in this place can be very proud of. It will make a difference to many peoples’ lives—to people who were not believed, who were not listened to and who were, quite simply, desperate. To all of you, I say: this is the next step. Here, in this place, we do believe you. We do want to find answers to your illnesses. I just hope that the AMA and the medical profession more generally go in with a fresh set of eyes and ears and look after these patients, because we’ve put them through enough. I seek leave to continue my remarks later.

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