Concetta Fierravanti-Wells (NSW, Liberal Party, Minister for International Development and the Pacific) Share this | Link to this | Hansard source

I present the government's response to the report of the Community Affairs References Committee 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 have the document incorporated in Hansard.

Leave granted.

The document read as follows—

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

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

November 2017

Introduction

The Australian Government has taken an interest in, and is concerned for, Australian patients who are sharing their stories about suffering with debilitating symptom complexes attributed to ticks. 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. Professor Chris Baggoley AO, 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. 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 its work with the clinical medicine 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 final report (the Report) building on the interim report tabled in May 2016. The Government thanks the Committee and the various stakeholders for their valuable and thoughtful input to the Inquiry.

This response addresses the specific recommendations raised in the Senate Committee's Report, and has been coordinated and prepared by the Department of Health. A general over-riding concern of the Government, expressed in these responses, is that, at this time, there is insufficient evidence to conclude that these debilitating symptom complexes are in large part 'tick-borne'. Many of the recommendations pre-suppose a tick-borne ætiology, the acceptance of which may not be in the best interests of achieving appropriate diagnosis and treatment for the suffering of these patients.

The Australian Government through the Department of Health remains open-minded about the cause of the various complexes which manifest as constellations of chronic debilitating symptoms. The best outcome for patients is to not draw conclusions based on poor levels of evidence, but to consider each patient thoroughly in a multidisciplinary medical approach that makes the best use of clinical acumen and available diagnostic skills and technology.

Recommendations and Australian Government responses

Recommendation 1

The committee recommends that the Australian Government Department of Health engage with stakeholders following the publication of the National Serology Reference Laboratory review to discuss the findings of the review and any bearing those may have on testing for Lyme disease in Australia.

The Australian Government, through the Department of Health, agrees to share the findings of the report and engage with stakeholders at an appropriate time.

Recommendation 2

The committee recommends that the Australian Government increase funding for research into tick-borne pathogens as a matter of urgency. This funding should include:

The Australian Government, through the Department of Health recognises the need to direct funding to determine the cause or causes of the symptoms affecting these patients through research that is comprehensive, evidence-based and incorporates a multidisciplinary assessment.

The department notes the current investigation of potential tick-borne infectious pathogens and the current lack of evidence that the illnesses in question are in large part tick-derived or of an infectious nature. However, the department agrees that research into the microbiome of ticks in Australia is important, given the evidence that ticks can transmit infectious diseases here and in other countries. Evaluation of the potential of identified organisms to cause infections is an important research goal, but will not necessarily lead to the therapeutic answers required by this patient population. It is premature to fund the development of new diagnostic tests unless and until causative agents are identified.

The National Health and Medical Research Council (NHMRC) is the government's lead agency for funding health and medical research. NHMRC accepts, through its various funding schemes, investigator-initiated research proposals in any area relevant to human health. This may include research proposals aimed at debilitating symptom complexes attributed to ticks.

In addition, research into debilitating symptom complexes attributed to ticks will be funded through an NHMRC Targeted Call for Research (TCR). TCRs are one of the mechanisms through which NHMRC directs priority funding to defined areas of need.

The Minister for Health has announced that the NHMRC will hold a TCR on this topic in 2017–2018. As a first step, NHMRC has established a committee of independent scientific experts and consumer representatives to help frame the research question for the TCR. The committee information can be found on the NHMRC website1.

Funding of $3 million will be available for this research and will be a significant response to the concerns of patients who are seeking answers to their medical condition.

It is premature to fund the development of new diagnostic tests unless and until causative agents are identified.

Recommendation 3

The committee recommends that government medical authorities, in consultation with stakeholders including the Australian Chronic Infectious and Inflammatory Diseases Society (ACIIDS) and the Karl McManus Foundation, establish a clinical trial of treatment guidelines developed by ACIIDS with the aim of determining a safe treatment protocol for patients with tick-borne illness.

The department has a working relationship with the Karl McManus Foundation and the Australian Chronic Infectious and Inflammatory Diseases Society and officials have met with representatives of both organisations since the tabling of the final report. Should evidence emerge to define the underlying cause of these debilitating symptom complexes, the department would be happy to engage in discussions about potential treatment trials.

We are cognisant of the evidence of Professor Lindsay Grayson to the Committee, suggesting multiple underlying causes for these symptom complexes. If the government's calls for research into the underlying cause of the symptoms does indicate multiple causes, treatment and treatment trials will need to be tailored to the appropriate diagnoses. Such research may include investigation of the merit of multidisciplinary medical teams in the assessment, diagnosis and treatment of patients.

Recommendation 4

The committee recommends that the Australian Government allocate funding for research into medically-appropriate treatment of tick-borne disease, and that medical authorities measure the value of treatment in terms of patient recovery and return to health. The best treatment options must then be developed into clinical treatment guidelines.

The Australian Government, through the Department of Health recognises the need to direct funding to determine the cause or causes of the symptoms affecting these patients through research that is comprehensive, evidence-based and incorporates a multidisciplinary assessment. Such research may reveal a component of tick-borne disease and contribute to appropriate treatments and the development of treatment guidelines.

Ethically designed clinical trials may be possible in the future when the causes of these debilitating symptom complexes are better understood.

Recommendation 5

The committee recommends that the Australian Government Department of Health facilitate, as a matter of urgency, a summit to develop a cooperative framework which can accommodate patient and medical needs with the objective of establishing a multidisciplinary approach to addressing tick-borne illness across all jurisdictions.

The Australian Government, through the Department of Health, partially supports this recommendation, and will arrange a forum with the proviso that stakeholders do not meet under the premise that the diseases in question are proven to be tick-borne. The Minister for Health and Minister for Sport, the Hon Greg Hunt MP, will convene and attend the forum. State and territory health authorities, the Australian Medical Association, representatives from the relevant medical colleges, along with patient groups, will be invited and encouraged to participate in the forum. All parties attending the forum will contribute to the development of a framework for patient-centred multidisciplinary care teams.

For the best care, including improving access to care, we believe that these patients need a coordinated multidisciplinary assessment and management approach. The department has already engaged with the learned medical colleges to facilitate this, noting the Commonwealth does not provide direct clinical services. States and territories, through specialist medical practitioners in their public hospitals, are best placed to play a leading role in establishing a multidisciplinary approach to care. Such an approach will also require each patient's general practitioner to be involved, in addition to general and subspecialty physicians, pathologists, psychiatrists and allied health professionals. In 2017, the department will approach state and territory government health authorities to propose a patient-focussed plan to pilot a multidisciplinary assessment and management clinic designed to answer research questions in multiple jurisdictions. The pilot program will then guide progress.

Recommendation 6

The committee recommends that federal, state and territory health agencies, through the Council of Australian Governments Health Council, develop a consistent, national approach to addressing tick-borne illness.

The Australian Government, through the Department of Health would support consideration of a national approach via the Council of Australian Governments' Health Council (CHC) and the Australian Health Ministers' Advisory Council (AHMAC) to the comprehensive multidisciplinary management of these debilitating symptom complexes. The Government, however, emphasises the need for an open mind on causality, so a national approach would not presuppose a tick-borne ætiology.

Recommendation 7

The committee recommends that the Australian Government Department of Health urgently undertake an epidemiological assessment of the prevalence of suspected tick-borne illness in Australia, the process and findings of which are to be made publicly available.

The Australian Government, through the Department of Health recognises the need to determine the cause or causes of the symptoms affecting these patients through research that is comprehensive, evidence-based and incorporates a multidisciplinary assessment. Should such research reveal an identifiable tick-borne disease that matches a symptom complex, the feasibility of an epidemiological study will be examined.

At this time, it is not possible to undertake such an epidemiological study without the evidence of, or ability to accurately diagnose, uncharacterised tick-borne illnesses (other than identified illnesses in Australia such as Australian Rickettsial infections and mammalian meat allergy).

Recommendation 8

The committee recommends that the Australian Government Department of Health establish the prevalence and geographical distribution of overseas-acquired Lyme disease in Australia.

Collecting epidemiological data on overseas acquired Lyme disease would be best achieved if overseas-acquired Lyme disease was nationally notifiable. Lyme disease has previously been considered by national public health experts twice for inclusion in the Australian National Notifiable Diseases List, however, on both occasions, the criteria for inclusion were not met.

As an alternative to collecting epidemiological data, the Australian Government, through the Department of Health, has published a guideline on overseas-acquired Lyme disease, which is publicly available. The department recognises that many medical practitioners are not familiar with overseas-acquired Lyme disease and will undertake through an education and awareness raising endeavour to inform Australian medical practitioners of the importance of recognising overseas-acquired Lyme disease.

Recommendation 9

The committee recommends that Australian medical authorities and practitioners addressing suspected tick-borne illness:

The Australian Government, through the Department of Health, has a patient-centric approach to health care.

The department strongly supports the removal of the terms "Lyme Disease", "Lyme disease-like Illness" and "Chronic Lyme Disease" from diagnostic discussions. They are unhelpful and divisive.

At present, there is not a clear agreed alternative nomenclature. The term adopted by the Committee "suspected tick-borne disease" is presumptive and could be divisive. The department proposes to use the term "Debilitating Symptom Complexes Attributed to Ticks" (DSCATT) which NHMRC has now adopted to describe its TCR, to describe the heterogeneous nature of the debilitating symptom subgroups with acknowledgement that ticks may have a role.

Recommendation 10

The committee recommends that, to help the referral of patients for guided and comprehensive pathology testing, medical practitioners work with pathologists, especially microbiologists, immunologists, chemical pathologists and hæmatologists to optimise diagnostic testing for each patient.

The Australian Government, through the Department of Health, supports this recommendation.

Recommendation 11

The committee recommends that the Australian Government Department of Health work closely with the Australian Medical Association and Royal Australian College of General Practitioners to ensure that general practitioners have a better understanding of how to treat patients who present with complex symptoms.

The Australian Government, through the Department of Health, supports this recommendation and will continue to encourage the Australian Medical Association and the Royal Australian College of General Practitioners to raise awareness amongst its members of the need to care for patients presenting with debilitating symptom complexes attributed to ticks sympathetically and with compassion.

Recommendation 12

The committee recommends that treatment guidelines developed by Australian medical authorities emphasise the importance of a multidisciplinary, case conference approach to patient care, involving consultation between general practitioners and specialists with expertise in neurology, psychiatry, rheumatology, immunology, infectious diseases and microbiology.

The Australian Government, through the Department of Health, strongly supports this recommendation and will work with state and territory health agencies under a national approach as proposed in Recommendation 6 of the report.

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1 https://www.nhmrc.gov.au/grants-funding/apply-funding/targeted-and-urgent-calls-research/research-debilitating

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

I thank the minister for tabling the government response to the report of the Community Affairs References Committee inquiry into the growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients. I move:

That the Senate take note of the document.

I chaired this inquiry. For once, I'm up here saying good things about the government and their response. I know that may shock some people, but—

Linda Reynolds (WA, Liberal Party) Share this | Link to this | Hansard source

Credit where credit is due.

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

Exactly. This committee inquiry, if people remember, was basically into the issues around the number of people who have a Lyme-like illness. We made 12 recommendations and we received hundreds of submissions and a lot of evidence from people that were affected by Lyme-like illness. One of the great issues for those affected by Lyme-like illness was that people didn't believe they were ill. We had a lot of evidence around doctors not believing them and about being rejected. In fact, the president of the AMA made a very unfortunate statement as we started our committee inquiry.

Importantly, out of the inquiry, people felt heard and they supported our recommendations. Government have now come a significant way in addressing this issue and I do welcome their response. It probably doesn't go as far as some people would like, but I think there has been some significant progress. The introduction in the government's response states:

… the Government has gained a deeper appreciation and real concern for those Australians experiencing these chronic debilitating symptoms …

It goes on to state:

The Government remains engaged with patient and medical community to continue to find, share and understand the evidence associated with this medical conundrum.

It's actually really significant that they are now saying they will look much more seriously at this issue.

I know some people have been frustrated, because I've been getting phone calls and emails about the government taking a little while to respond to the committee's inquiry. I know that the government have been engaging with our recommendations for some time, and I note my appreciation for the updates on their progress. The fact that the government are now making some progress here makes up for the government's delay that some people see.

It's important that the government now recognise and acknowledge that people are ill and are sick. That is such a significant step in the right direction. From my reading of the government's response, while they believe people are ill, they're don't necessarily think the evidence is there around whether it's caused by ticks, whether it's tick-borne. The evidence the committee received does show that there could be potential for other vectors. A lot of the government's response is termed around, 'There may not be evidence around tick-borne but we have to find out what it is'—that's how to summarise it in a couple of quick sentences.

The government also state:

The Australian Government through the Department of Health remains open-minded about the cause of the various complexes which manifest as constellations of chronic debilitating symptoms. The best outcome for patients is to not draw conclusions based on poor levels of evidence, but to consider each patient thoroughly in a multidisciplinary medical approach that makes the best use of clinical acumen and available diagnostic skills and technology.

I think, again, we are making some progress.

In response to the committee's recommendation 2, where we recommended that the government increase funding for research, the government made quite a lot of comment:

The Australian Government, through the Department of Health recognises the need to direct funding to determine the cause or causes of the symptoms affecting these patients through research that is comprehensive, evidence-based and incorporates a multidisciplinary assessment.

That is one of the things that came out of our report very strongly—that we need to be taking a multidisciplinary approach. The government goes on to articulate that the NHMRC has started a process called a 'targeted call for research', or TCR, and the minister has announced that the NHMRC will hold a TCR on this topic in 2017-18. It goes on to say that $3 million has been allocated for research in the TCR process. They think that there will be a significant response to the concerns of patients who are seeking answers to their medical conditions.

We also made some comment in our report around the terminology. We recommended that we don't call it 'Lyme-like' anymore or use any of the words that are basically associated with the Lyme-like illness, because it doesn't adequately describe what's going on. They didn't quite agree with the terminology we suggested—fine—but they are taking the approach of calling it 'debilitating symptom complexes attributed to ticks'. In other words, we're going to start looking at these. At the moment, people think it's caused by ticks because classic Lyme disease found in America and European countries is caused by ticks. We just haven't been able to quite prove that yet here. Although there's a strong belief it is, we haven't been able to prove it, but we know people are sick. We know that there are debilitating symptoms and that this issue needs to be addressed. I'm really pleased to see that the research is going ahead.

The government also agreed, as I said, to the funding. They said:

The Australian Government ... recognises the need to direct funding to determine the cause or causes of the symptoms affecting these patients through research that is comprehensive, evidence-based ...

I take it from their recommendations that they also realise that other vectors could be involved. They then go on to talk about our recommendations. Our recommendation 6 says:

The committee recommends that federal, state and territory health agencies, through the Council of Australian Governments Health Council, develop a consistent, national approach to addressing tick-borne illness.

The government said:

... the Department of Health would support consideration of a national approach via the Council of Australian Governments' Health Council ... and the Australian Health Ministers' Advisory Council ... to the comprehensive multidisciplinary management of these debilitating symptom complexes. The Government, however, emphasises the need for an open mind on causality ...

In other words, they again move away from whether it's tick-borne to look at what other causes may be involved.

The government have published already, in response to our recommendation, recommendations around the prevalence and geographical distribution of overseas-acquired Lyme disease, because there are cases of classic Lyme disease in Australia that were acquired overseas. They say:

... the Australian Government, through the Department of Health, has published a guideline on overseas-acquired Lyme disease, which is publicly available.

The government also support our recommendations around assistance to patients and, in particular, the need for a comprehensive approach and a multidisciplinary approach.

As I said, we have waited a little while. I'm sure some people think the government should have gone further, but I think this is a comprehensive response. I congratulate the government and say thank you to the government for responding in a meaningful way. Let's keep the momentum on this issue. It needs to be addressed. I beg the government to please keep going on this issue. Help the people who are suffering from these debilitating symptoms.

Linda Reynolds (WA, Liberal Party) Share this | Link to this | Hansard source

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.

Leave granted.

Sam Dastyari (NSW, Australian Labor Party) Share this | Link to this | Hansard source

I rise to provide a few brief comments regarding the Community Affairs References Committee's inquiry into the growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients. I will be very brief and won't keep the Senate waiting too long. This inquiry commenced almost two years ago and was re-adopted at the start of the current parliament. In that time, it attracted significant public interest, with over 1,200 submissions received, many of them from Australians who are experiencing chronic, debilitating symptoms that they associate with a tick bite. The committee included coalition, Labor and crossbench senators and tabled its final report on 30 November 2016. The government was required to respond to the committee reports within three months of their tabling. This response has taken 12 months—four times the allowed period. This follows the six months that it took the government to respond to the committee's interim report, after which the government provided a two-page response. At long last, Labor looks forward to having an opportunity to review the government's response. This response, on face value, appears more substantial than its previous attempts. I hope that this does justice to the many issues that have been raised by many people as part of this inquiry. I seek leave to continue my remarks later.

Leave granted; debate adjourned.