- Nationals Motion to make Lyme-like illness a ‘notifiable disease’
- DSCATT Patient Forum in Sydney
- Final Report on Ministerial Forum
- Ministerial Forum in Melbourne
- LDAA Statement to Government Response
- 12 Senate Recommendations
- All the Senate Hearings in One Place
- Senate Submission Thank You
- LDAA Submissions to the Senate Inquiry
- LDAA Senate Inquiry Supplementary Submission
- LDAA Analysis of Dr Michelle Wills’ Thesis
Nationals Motion to make Lyme-like illness a ‘notifiable disease’
At the 2018 Nationals Federal Council, held at the Hyatt Hotel in Canberra, on 18 August the following motion was moved. The Conference is made up of National Party members from Senators to Ministers and elected members from all around Australia representing their communities.
Motion: That this Nationals Federal Council request the Australian Government to:
- Recognise that a Lyme-like disease exists in Australia and is placed on the ‘notifiable disease’ register.
- Insist that doctors who are treating Lyme-like disease in Australia are protected from investigation and reprisals, in particular but not limited to, medical boards in Australia.
- Insist that general practice and infectious disease specialist doctors are provided best practice education on Lyme-like diagnosis and treatment.
- Ensure patients are offered affordable testing, treatment, and full access to acute and chronic disease support.
- Commit to research, on par with other infectious diseases, such as Zika, SARS, Ebola etc.
- That this matter be treated with urgency and is initiated prior to the upcoming Federal Election.
In part, Mia Davies, Leader of the Nationals in Western Australia who moved the Motion said “Murdoch University research found Lyme-like pathogens in Australian ticks. The systemic denial of Lyme-like disease in Australia arose from a 1994 government funded research project that failed to detect Borrelia burgdorferi in Australian ticks. What is particularly confounding is the study reported bacteria was found but it was dismissed, and no further scientific inquiry was made. Evidence of the contrary is easily available in studies which completely contradict the conclusion of the Russell & Doggett study that “there is no Lyme here”. In the quarter of a century since, this pandemic has now swept the world, and it is implausible that vector/s can cause incredible pain and suffering on every continent except Australia.
Since the 12 Recommendations were published, very little has changed, and patients are losing hope with some taking their own lives. We are losing patience with the Chief Medical Officer who appears to lack understanding and compassion for thousands of Australians, despite our best efforts.”
This is a fantastic result for Lyme patients, with the LDAA once again delivering solid results for our members. We will continue to represent Lyme patients and sincerely thank the National Party for their support.
DSCATT Patient Forum in Sydney
Professor Murphy and Department of Health staff, as well as National Health and Medical Research Council (NHMRC) representatives attended the forum and were fully engaged. Minister Hunt opened the forum with a video welcome and reaffirmed his commitment to providing a pathway to the future for Lyme patients. Those who attended on behalf of their patient groups were knowledgeable, professional, and persistent. While it’s been broadly rumoured that the proposed multi-disciplinary clinic approach to treatment is already planned and set in stone, Professor Murphy denied this is true. Both Professor Murphy and his Department were firm in their reassurance that the way forward hasn’t been finalised and more input will be sought, including from patients. They committed to a second forum before the end of 2018.The challenges
There were several representatives on both sides who were new to the complexity involved in patient-government engagement. As such, there were obvious knowledge gaps for those new to leading Lyme-like illness on behalf of Government which necessitated the retelling of personal stories from patients when it might’ve been more productive to focus on solutions going forward. The research
The NHMRC Targeted Call for Research into DSCATT closed and was re-opened until 5pm on August 29th. They are developing a panel (for which they intend to include overseas expertise) to assess the applications and expect to announce successful applicant(s) before the end of the year.Outcomes
All parties agreed to continue to be consultative and we look forward to another forum before the end of the year
On April 18th, 2018 along with chief health officers, including Dr Richard Schloeffel, the Lyme Disease Association of Australia (LDAA) attended the Ministerial Forum for Lyme-like illness convened by the Hon Greg Hunt, Minister for Health. This was Recommendation five of the Senate Recommendations.
The Forum was directed at the medical profession and was designed to bring state and territory health officials to the table to discuss a collaborative way forward. Minister Hunt ensured the patient voice came first on the day.
Minister Hunt was authentic in his acknowledgement of Lyme patients and genuine in his commitment to improve the situation for all of us. The Minister acknowledged the patient suffering and referenced the patients on the empathy wall (placed in the room prior to the meeting). These were the same patients whose photos were presented to the Chief Medical Officer in 2013.
From our perspective there seems to be a disconnect between Minister Hunt’s intent and the Department of Health’s action. The Department appears trapped in the bureaucratic denial with an obvious lack of foresight for strategic action. We can all hope this will be a step for change as Minister Hunt is asking for action.
A discussion on education and awareness revealed that no state or territory health department had any information on preventing tick-borne illness (although we knew this, they didn’t!) and little to no information to support medical practitioners was available in the signs, symptoms, diagnosis and treatment of suspected tick-borne illness. The discussion focused on what could be done to improve this situation.
We look forward to the next patient forum. In the meantime we will continue to progress our Strategic Action Plan, starting with the Scientific Advisory Committee (SAC) to inform a national agenda for research priorities, treatment regimes and patient recovery, together with Lyme-Ed, to offer world’s best practice education for patients and their practitioners.
Thank you for continued support of our actions. We are far stronger together. We’ve received fantastic feedback on this video of Dr Schloeffel presenting at the Forum.
The Department’s response is grossly inadequate and completely ignores the responsibility of the Government in its role to protect the health of all Australians. This is a failure of leadership and must be remediated as a matter of urgency. On 24 November, 2017, the LDAA issued a Statement in response to the Government.
There have been 12 recommendations around testing and patient support tabled for the Inquiry into Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness.
You can find them on Page 10, or read the report in full. Or watch the YouTube clip below of proceedings:
Couldn’t make it to the senate hearings last year? Well, we’ve got you covered with them all in one place. Head over to SoundCloud and listen to them in all their glory.
The LDAA would like to send out a huge THANK YOU to those who made submissions to the Senate Committee about their story. It was this overwhelming effort which ensured the Government listened. Without your help we could not have achieved what we did.
The Lyme Disease Association of Australia represented patients at this important inquiry into Lyme-like illness in Australia. You can view the submission in full here.
There were 1,268 submissions to the Senate Inquiry. You can view them all here.
The Lyme Disease Association of Australia’s supplementary submission (#528ss2) to the Senate Inquiry into Lyme-like illness in Australia. You can view the submission in full here.
Dr Wills is well known in the Australian Lyme community. As a university graduate, she and her supervisor Prof Richard Barry, were the first to report Borrelia (a species of bacteria of which some strains cause Lyme disease) in Australian ticks, in 1991. The pair then collaborated with other members of the Microbiology departments of Newcastle University and Sydney’s Royal North Shore Hospital, to examine the responses of patients with Lyme-like illness to Lyme disease tests.
After promising findings on this second project were published in 1994, the trail went cold; we couldn’t find any further documents by Wills and Barry. A government-funded study (known as the ‘Russell and Doggett’ study), also in 1994, concluded that there were no Borrelia in Australian ticks and it was suggested that Wills and Barry’s 1991 discovery was simply disintegrating forms of other bacteria, that had the appearance of Borrelia. The government accepted this conclusion and no further research funding was made available. The Australian Government Department of Health has consistently used the Russell and Doggett study to support their “no Lyme here” stance ever since.
Previously unavailable excerpts from Dr Wills’ thesis were a revelation to the LDAA and we reached out to Dr Wills for more information. This resulted in a supplementary submission to the Senate Inquiry.
The LDAA were pleased to announce that, in partnership with Dr Wills, we ensured that the entire thesis was available online for the first time. The thesis is 319 pages in length, and, as one would expect, is at times highly technical. The LDAA have therefore produced a summary of the information that was previously not widely available to the media and patient community, and put it into context. It has been reviewed by Dr Wills to ensure accuracy – we thank her for her time.
We hope that this analysis of the thesis will highlight the Australian Government’s ongoing bias in relation to progressing our understanding of Lyme-like illness, and as a result, patient well-being.