- 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
The Final Report on the outcomes of the Ministerial Forum in Melbourne (see below) has now been published on the Department of Health's Website.
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 have not 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.
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.