Federal Government & Senate Inquiry


LDAA Statement to Government Response

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.


12 Senate Recommendations

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:


All the Senate Hearings in One Place

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.


Senate Submissions Thank You

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.


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Targeted Call for Research

The Lyme Disease Association of Australia represented patients in this call for research priorities. You can view the submission in full here

 


 LDAA Senate Inquiry Submission

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.


 

LDAA Senate Inquiry Supplementary Submission

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.


LDAA Analysis of Dr Michelle Wills' Thesis

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.


Counter-arguments and Responses

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.


Clinical Advisory Committee on Lyme Disease

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.


Patient Surveys and Statistical Collection

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.

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