Motion
HON ALISON XAMON (North Metropolitan) [10.34 am] — without notice: I move —
That this house notes the 2016 Senate committee report on the “Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients” and calls on the government to establish an ongoing mechanism for ensuring that the Western Australian context is represented in the implementation of recommendations made in this report.
I thought I would begin by setting the scene for members on why this issue has arisen. We know that for decades Australians, including a significant number of Western Australians, have been reporting chronic and debilitating symptoms that are quite complex, and they have been attributing these to ticks. We know that the people who are experiencing this illness are caught in a catch 22 because of the complexities surrounding the ability to diagnose, as well as the different approaches that are taken because no data has been collected. Because of the lack of data on the number of people who have been affected, trying to find a solution has been considered to be less urgent. People who are incredibly unwell are being turned away without a proper diagnosis and are being told far too often that simply nothing can be done, and so they cannot get the support that they need.
There are many terrible stories of the suffering that has resulted from this particular syndrome. Sadly, we know that some people who have suffered have subsequently died by suicide because of the crippling effects of their illness and the extent of their sense of hopelessness. I want to quote Bevan Jeffery of Manjimup, who said —
It’s hard not to come to the conclusion that you are screwed once you get this disease.
He also said —
It is a reduced existence ...
I can’t help waiting for medical science to find the underpinnings of this disease so that future suffering may be prevented for many people.
I understand that Mr Jeffery died a couple of years ago and my condolences go to his family.
Further contributing to the distress of people who find themselves with this crippling disease is their interaction with the medical system. There is limited awareness amongst medical practitioners about the nature of this condition, which means that too many patients are not able to readily access the treatments that they need in any sort of timely manner. Unfortunately, people are reporting feeling stigmatised, bullied and harassed by health professionals, who often simply do not believe that such a syndrome exists within Australia.
The establishment of the Senate inquiry was a big step forward towards validating the experiences of thousands of Australians and acknowledging that there are massive gaps in the understanding and the subsequent treatment of these complexes. There is no doubt that we have a vexed conundrum, but it is one that we cannot continue to put into the too-hard basket. Submissions were made by 1 260 people in one form or another to the inquiry. It is clear that too many people are being let down by the health system. The recommendations made by the Senate committee represent a good start and we in Western Australia must ensure that the Western Australian experience is included in the research and that our government is augmenting the work done federally through our state agencies to best support those who are affected.
Such is the complexity of this issue that there is not even a universally agreed case definition of the nature of this chronic condition. However, we do know that the constant reference to Lyme disease has proven to be an unhelpful distraction. The reason for that is that the pathogen that causes Lyme disease in Europe and the United States has not been proven to exist in Australia, which leads many in the medical profession to disregard the presence of all tick-borne illness in Australia, despite evidence to suggest that Australian-specific and, indeed, Western Australian– specific—that is why it is so important that we participate in the national research—organisms are carried by ticks here. One of the recommendations made by the Senate committee was to —
remove ‘chronic Lyme disease’, ‘Lyme-like illness’ and similar ‘Lyme’ phrases from diagnostic discussions.
I used the phrase “Lyme-like illness” in this motion because I wanted members to understand what it was I was referring to. I note also that a WA-based group has been set up to provide peer support and advocacy for people who are suffering from the condition, and it has adopted the name “multiple systemic infectious disease syndrome”, or MSIDS, to reflect the multiple infectious causes and multisystemic nature of this condition. For the purposes of this motion and so that members will understand, I will use the term MSIDS from here on.
I turn to the recommendations of the Senate committee report, which look at increasing research into potential pathogens and their prevalence and also, importantly, their geographical distribution, while at the same time developing an evidence-based approach to treating people who have already been affected. We know the federal government has committed $3 million through a National Health and Medical Research Council targeted call for research, and that is a good start. NHMRC has established a committee of independent scientific experts and consumer representatives to help frame the research question for TCR. However, it is worth noting that there is currently no WA representation on the advisory committee. That is something that I certainly hope can be resolved as we move forward.
Given the potential for multiple-cause agents to be identified with co-occurring infections that might differ across geographic locations, it is going to be vital, as I said before, for WA to be specifically represented in this research. We are quite fortunate in WA because we have considerable expertise in this field already. Professor Peter Irwin and his team work in the waterborne pathogen research group at Murdoch University, and they have already started researching tick-borne viruses. I note that Professor Irwin has observed that the situation in Western Australia is likely to be subtly different from that of the eastern states. For example, paralysis ticks are found over east but not found here, thank goodness. The paralysis tick is part of a family of ticks that are found overseas and are well known to be transmitters of Lyme disease, but we do not know what we are dealing with here in Western Australia.
Although research is clearly important, it is not going to detract from the need to ensure that people who have already contracted MSIDS receive appropriate treatment and access to decent medical care. We also need to ensure the timely implementation of recommendation 9 across Western Australian health services. Recommendation 9 states, in part, the need to —
consistently adopt a patient-centric approach that focusses on individual patient symptoms, rather than a disease label ...
Recommendation 6 is also of particular relevance to the states and territories, and calls on the Council of Australian Governments’ Health Council to develop a consistent national approach to addressing tick-borne illness. It is imperative that WA comes to the forum with aconsidered approach on what is needed to best support Western Australians who are suffering from MSIDS.
Undoubtedly, the inquiry findings represent progress; however, the government’s response to many of the recommendations demonstrates once again the conundrum that many patients have found themselves lost in—that is, that the government is not going to conduct treatment trials unless a causative agent is found. Likewise, the government argues that it cannot undertake an epidemiological assessment of the prevalence of the condition without the evidence or ability to accurately diagnose uncharacterised tick-borne illness. We can only hope that a significant investment in research will serve to disrupt a vicious cycle.
Prevention also has an important role to play in this space. We know that illnesses acquired through tick bites are ultimately entirely preventable. There is already enough evidence to prompt the government to take a precautionary approach by raising awareness of MSIDS and the best known way to prevent it, even if the exact causative agent has not yet been identified. Professor Irwin said —
“Over the last 30 years recognition of a ‘Lyme-like’ syndrome has emerged, the onset of which has been attributed to people bitten by native Australian ticks,” ... “There have been manifestations of an undiagnosed illness causing significant patient distress, with symptoms presenting in a similar fashion to tick-borne diseases overseas.”
Prevention is recognised as a key strategy in overcoming the burden of this chronic disease. The House of Representatives’ Standing Committee on Health’s inquiry into chronic disease prevention and management in primary health care has already classified tick-borne and Lyme-like illness as a chronic disease within Australia. But due to the low level of awareness about the potential for illness from a tick bite, no prevention strategies are in place in Western Australia. As I mentioned before, the stigma and controversy around this particular illness presents a barrier to community awareness and the coordinated development of prevention strategies.
I urge the state government to take action now to raise awareness of the potential for illness as a result of tick bites and to start conveying messages about how best to avoid being bitten in the first place. We need to ensure that WA is included in the research and that our interests are properly represented. Unlike the federal Parliament, to date there has been little government or political attention on the issue within Western Australia, despite the fact that we know that many Western Australians are suffering. The state government has a role to play to safeguard the health of our constituents and it also has obligations in respect of emerging diseases. These diseases require targeted and urgent responses. We should all have a right to medical care, irrespective of what caused that illness in the first place. We need to ensure that Western Australians will not be at a disadvantage compared with other Australians through a lack of awareness, participation and research or because of a lack of modes of treatment.
We encourage the WA government to pick up on the important work that has been recommended as a result of the federal committee’s report and take a strategic approach to this issue to ensure that some formal mechanisms are in place, accompanied by sufficient resourcing, to ensure that our expertise, our operating environment and our geographical context help inform the implementation of the Senate inquiry recommendations. Having spoken to many people within the community, I am aware that one of the first things people seek is information about what the Department of Health intends to do in order to progress this matter, and specifically the structures being looked at in order to ensure that the health department is receiving appropriate advice and guidance not only from researchers and professionals, but also from those people who are living with this insidious illness. I know that this issue would not necessarily be at the forefront of many people’s minds but I am sure that many members here know of people who live with this particularly complex illness and recognise that it is utterly debilitating. It is important that we progress work in this area.
[Speeches and comments from various members]
Motion lapsed, pursuant to standing orders.