James McGrath (Queensland, Liberal National Party, Assistant Minister to the Prime Minister) Share this | Link to this | Hansard source

I present the government's response to the report of the Community Affairs References Committee on its inquiry into the growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients. I seek leave to incorporate the document in Hansard.

Leave granted.

The document read as follows—

Australian Government response to the Senate - Community Affairs References Committee interim report:

Inquiry into the growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients

Introduction

The Australian Government has taken an interest in, and is concerned for, Australian patients who are sharing their stories about suffering with multiple chronic debilitating symptoms. The Government, through the Australian Government Department of Health, began engaging with patients and advocacy groups in early 2013 to discuss the concerns about Lyme borreliosis, also known as Lyme disease. Prof. Baggoley, established a short-term advisory committee (Chief Medical Officer's Advisory Committee on Lyme Disease in March 2013 [CACLD]) to consider the evidence for a Borrelia species causing illness in Australians, looking at diagnostic algorithms for borreliosis in Australians and treatments for borreliosis, awareness-raising and education, plus research into borreliosis.

Through regular communication and correspondence, the Government has gained a deeper appreciation and real concern for those Australians experiencing these chronic debilitating symptoms, which they associate with a tick bite. The Government remains engaged with the patient and medical community to continue to find, share and understand the evidence associated with this medical conundrum. The Government hopes our work with diagnostic pathology and research communities will result in answers and relief for patients and their families.

The inquiry into Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients conducted by the Senate - Community Affairs References Committee culminated in the Committee's interim report (the Report). The Report is an important document and the Government thanks the Committee and the various stakeholders for their valuable and thoughtful input to the Inquiry.

This response addresses the recommendations raised in the Report, and has been coordinated and prepared by the Department of Health.

Recommendations and Australian Government responses

Recommendation 1

4.52 The committee recommends that the Community Affairs References Committee continue its inquiry into this matter in the 45th Parliament.

This is a matter for the Senate. The Government, through the Australian Government Department of Health, welcomes the possible continuation of the inquiry into the forty-fifth Parliament to ensure affected patients, their families and their healthcare providers are supported while biomedical research continues and the medical profession develops further strategies to diagnose and treat the illness of the affected patients.

Recommendation 2

4.56 The committee recommends that the Department of Health further develop education and awareness strategies for:

- the public about the prevention of tick bites and seeking medical attention; and

- the medical profession about how to diagnose and treat classical Lyme disease acquired overseas and known tick-borne illnesses acquired in Australia.

The Government, through the Australian Government Department of Health, will augment the material on tick bite prevention and first aid it has already published1 with regular review and revision in consultation with experts.

The Australian Guidelines for the diagnosis of overseas acquired Lyme disease/borreliosis are included on the NHMRC managed clinical portal. The guideline has also been published in Communicable Diseases Intelligence Vol 39 No. 4 December 20152.

The department will consider developing an additional guidance document focussing on treatment of classical Lyme disease in consultation with medical experts.

Recommendation 3

4.58 The committee recommends that the Chief Medical Officer continue to consult with the medical and patient communities through mechanisms such as the Clinical Advisory Committee on Lyme Disease, and for the Department of Health to continue to facilitate meetings with medical and patient representatives.

The Government, through the Australian Government Department of Health, will renew its engagement with the clinical reference group established by the Lyme Disease Association of Australia which works to join all the advocacy groups concerned about this chronic debilitating illness.

The department will also seek to participate in relevant medical education meetings and conferences to inform relevant sectors of the medical profession on progress being made in Australian research and where forums exist to encourage the exchange of ideas and information relevant to the medical profession and patients.

1 http://www.health.gov.au/lyme-disease#preventing-treating

2 http://www.health.gov.au/internet/main/publishing.nsf/Content/cda-cdi3904d.htm

Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

I move:

That the Senate take note of the document.

I am pleased to see that the government has responded to our interim report and I am pleased to see it has done it relatively quickly, although I acknowledge that there were only a few recommendations that needed to be responded to. Of course, the senator has already responded to the first recommendation, which was that the Community Affairs References Committee inquiry continue this matter into the 45th Parliament, and we have been doing just that. The inquiry was re-referred to us and, in fact, we held a hearing in Sydney last Wednesday. I think some of my colleagues will comment on that and I will come back to it too.

The committee's second recommendation was:

The committee recommends that the Department of Health further develop education and awareness strategies …

We heard a bit about that during the hearing last week—about the protection of tick bites and seeking medical attention. This is where I want to make a few comments. The recommendation was also to develop education and awareness strategies for the medical profession:

… about how to diagnose and treat classical Lyme disease acquired overseas and known tick-borne illnesses acquired in Australia.

The comments that have been made in the government's response are:

The Australian Guidelines for the diagnosis of overseas acquired Lyme disease/borreliosis are included on the NHMRC managed clinical portal. The guideline has also been published in Communicable Diseases Intelligence Vol 39 No. 4 December 2015.

The response then says:

The department will consider developing an additional guidance document focussing on treatment of classical Lyme disease in consultation with medical experts.

That is not exactly what we were asking for. We were asking about known tick-borne illnesses acquired in Australia. This goes to the crux of some of the issues that we discussed in the interim report, but we also received a lot more evidence about it during the week. Of course, I am not going to pre-empt anything that the committee may recommend when we do our report in the not too distant future, but it is quite clear from the evidence that there are significant issues related to tick-borne illnesses in Australia.

We heard of cutting-edge research—part of which is happening at Murdoch University in our home state, Mr Acting Deputy President Back—where they are finding so many pathogens related to ticks and they are talking about interaction of pathogens in relation to ticks and, I must say, other vectors as well. I am a little concerned with that response from the government and whether they are saying here that they are intending to include it, whether they mean that they are intending to include it but have not said it, or whether they have not actually got the point. Tick-borne illnesses are a very significant issue and there is absolutely no doubt that there are people who are very sick from these illnesses in this country. We received evidence again last week about the relationship between people becoming ill and being bitten by ticks. So it is absolutely essential that we start to look at and develop those guidelines that also relate to known tick-borne diseases acquired in Australia.

The other recommendation relates to the Chief Medical Officer:

The committee recommends that the Chief Medical Officer continue to consult with the medical and patient communities through mechanisms such as the Clinical Advisory Committee on Lyme Disease, and for the Department of Health to continue to facilitate meetings with medical and patient representatives.

There have been some concerns—in fact, a lot of concern—that that has not been happening. It is pleasing to see that the government has said it will renew its engagement with the clinical reference group. That is important, but I actually think that we need to see a really meaningful engagement on these issue because people are feeling stigmatised. They are obviously ill and they are feeling stigmatised and ignored. People talk of harassment and bullying and being told that their illness is all in their head when quite patently people are ill. It is not the way to treat people. People talk about being depressed with this illness. They are certainly depressed when they get told that they do not have an illness. I actually do think that there are some people that have associated depression because of the way they have been treated. There is absolutely no doubt in my mind that people are ill.

There is a debate over classic Lyme and chronic Lyme. We are also having a discussion in the committee—we had it again last Wednesday with witnesses—about whether we should actually even abandon the name 'Lyme'. Some organisations already have. There is no doubt in my mind that people are sick and there is a relationship to tick bites and other vectors. We are starting to get some evidence around the illnesses that we have as well. This is what the research is coming out and showing: we have unique species or pathogens over here and unique bacteria that are associated with vectors, including ticks.

We will be reporting very soon on the inquiry and the further evidence that we have gathered on the issues that we had indicted in our report were the next steps for further investigation. We will be reporting on that in the near future. I do thank the government for their response, but I do urge them to go further on the matters that I have discussed. I am sure that I will be standing in this place, urging them very strongly to go further on the recommendations that we will be making in the next couple of weeks.

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

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.

Jacqui Lambie (Tasmania, Independent) Share this | Link to this | Hansard source

I would just like to respond to the government's response with reference to Lyme disease. I was part of the committee, and I am very grateful to former Senator John Madigan, who asked me to step in. This is one of the promises that I made and I am very grateful, so I have to thank former Senators Madigan and Dio Wang. As you would know, Mr Acting Deputy President, our load is quite big at times, being Independents, so we tried to share that workload around between us last time. And I am very grateful to have listened to what these Lyme disease sufferers have said.

I have noticed that it has caused controversy and conflict all over the world, especially in Australia, where we officially do not recognise Lyme disease. The medical and research professionals are polarised on this topic and have not come to an agreement. Instead of making it so difficult, they should just call it what it is: it is a tick-borne disease. But what we can agree on is that there are thousands of Australians suffering with tick-borne disease. We know that there are thousands of Australians who are misdiagnosed or told that it is all in their heads. We have thousands of Australians whose lives have been torn apart by this disease, and their families and friends are also suffering.

What else do we know? We know that when people get bitten by a tick they are coming down sick very shortly after, and they are coming down very sick. We know that these symptoms are being passed on to their children. We do know that tick-borne disease can be contracted overseas and we learnt on Sunrise this past weekend that there are five or six new and uniquely Australian varieties of the bacteria that cause tick-borne disease.

Just last week I attended the Senate committee hearing which looked into the growing evidence of an emerging tick-borne disease that causes illness in many Australian patients. I have heard both sides of the story and I have had a lot of people contact my office seeking help. What I have found is that there is still a lot that we do not know about this bacteria, about the pathogens and about tick-borne disease itself—and certainly about the variants that we have here in Australia. But denying that we have some sort of tick-borne disease in this country will not give us the answer as to why these people are extremely sick.

These are the questions that need to be asked, this is what people were telling the committee last week and it is what I have heard in the past and from John Madigan. I want to know if the symptoms can be sexually transmitted, or transmitted through blood or plasma products. What they are telling me is that it can stay dormant for 25 years after the bite. If this is true, then what is going on with our blood services? We need to get on top of this, and we need to get on top of it fairly quickly.

I want to know: if the new and uniquely Australian varieties of bacteria which cause Lyme disease or tick disease do not cause tick disease, what disease do they cause? We do not know how to treat or manage this disease—well, that is what most of the medical professionals are telling us, although we have a group of medical doctors that are telling us they have a 70 per cent success rate. I suggest we talk to them as soon as possible.

It is about time the professional bickering over the disease stopped and the government funded research to answer the questions surrounding the tick-bone disease. That way we can properly equip the medical professionals with the tools to diagnose and treat the thousands of people living in constant pain and misery. While the bickering continues and the government does not specifically fund research for the tick disease, victims of tick bites are not getting the help they need, and that is a real problem. It is also putting a great deal of strain on our public health system, and I think it is already under enough. As it stands, victims are getting a triple shot of chronic fatigue and being misdiagnosed with MS or lupus or anything else the doctor can excuse himself for when he cannot come up with an answer. I heard from a lady who spent seven years visiting doctors and specialists, and it was not until her blood was sent to the US—that is right: all the way to the US—that she was finally able to receive closure and was diagnosed with what they call Lyme disease, which basically is tick disease.

Government-funded research would shine a spotlight on this tick-borne disease and find closure for many sufferers, who just want to have their pain and suffering recognised and to be reassured it is not in their heads. It is actually real. Government-funded research would answer the questions I and many others have outlined: what is it and how could it be treated more importantly? And this is an opportunity for the research and medical professions to break new ground. How wonderful if we could find a cure for tick disease. That would be groundbreaking. There would be millions of sufferers around the world.

I will conclude by endorsing the recommendations of the Senate Standing Committee on Community Affairs on this issue, which include an ongoing inquiry in the 45th Parliament, and a recommendation to develop education and awareness programs for the public and the medical professionals regarding ticks, tick-borne illnesses, and classical Lyme-like disease contracted overseas or even in our own country and for the chief medical officer to continue consultation with the medical and patient communities. But I must emphasise these recommendations are meaningless if they are not backed up by a government commitment to fund research into tick-borne diseases, such as Lyme disease.

In concluding, I am very aware that Lyme disease is massive in America. As a matter of fact, most people that have been diagnosed with Lyme disease have their testing done either in America or in Germany. It is very hard to ignore the historic and unprecedented political events unfolding in America right now. It is more than likely that President Obama will be replaced by President Trump, and that opens the door to some great opportunities for Tasmania and Australia. I congratulate President Trump, his family and his team. He is a straight talker and we need more straight talkers in politics. I note that President Trump is opposed to the TPP trade deal, which undermines Australia's sovereignty, and I simply say: let's do a trade deal with American that benefits both our countries. After all, we are great friends and share a love of democracy and freedoms. I seek leave to continue my remarks later.

Leave granted; debate adjourned.