- LDAA Statement to Government Response
- 12 Senate Recommendations
- All the Senate Hearings in One Place
- Senate Submission Thank You
- Targeted Call for Research
- LDAA Submissions to the Senate Inquiry
- LDAA Senate Inquiry Supplementary Submission
- LDAA Analysis of Dr Michelle Wills' thesis
- Counter-arguments and Responses
- Clinical Advisory Committee on Lyme Disease
- Patient surveys and statistical collection
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 in this call for research priorities. You can view the submission in full here
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.
The LDAA prepares and develops appropriate counter-arguments in response to other organizations position or policy statements which impact the Lyme Disease patient and related community members.
- LDAA's questions to government in regards to the NRL Report on testing - submitted 4th December 2017
- LDAA's statement to the Government response issued 24 November 2017
- LDAA's Counter-argument in response to the Royal College of Pathologists of Australasia position statement on Lyme Disease.
- LDAA's response to the Department of Health's statements on Lyme Disease issued 29 May 2015.
The LDAA performs a number of important functions relating to the Clinical Advisory Committee on Lyme Disease (CACLD) established and currently run by the Australian Government. The first is having secured a place for a patient representative on the committee to ensure patient requirements are sufficiently and adequately represented. The second is to respond to requests for public submissions from the CACLD by way of development and production of appropriate researched and informed responses.
The LDAA’s full submission:
Other Association and Group submissions:
As many would be aware Lyme Disease in Australia is not currently notifiable so it is important the LDAA collects and collates necessary data to inform on-going strategy and development of necessary submissions and counter-arguments. If you are more visual head to our statistics section to see the reality of Lyme disease in Australia.
- 2013/14 Lyme Disease - Australian Patient Experience in 2013 (Coming soon - but check out our statistics section for an initial visual representation)
- 2011/12 Lyme Disease - Australian Patient Experience in 2012.