Lyme disease and other tick-borne diseases (TBDs) continue to be overlooked and underfunded health concerns in Australia. Despite their prevalence and impact on individuals and communities, research and funding in this area remain insufficient.

Background

The Australian Government does not collect data on officially recognised TBDs, unrecognised TBDs, or ‘DSCATT’ – Debilitating Symptom Complexes Attributable to Ticks. Q Fever (Coxiella burnetii) is the only TBD that is nationally notifiable. Despite the several recommendations from the 2016 Senate Inquiry into a Lyme-like Illness in Australia that suggested they do so, no new data collection programs have been initiated.

Two relevant recommendations (which remain incomplete) from the 2016 Senate Community Affairs References Committee’s Final Report are below:

Final Report 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.

Final Report 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.

Community-Driven Data Collection

A volunteer-run charity should not shoulder the responsibility to collect crucial data, and we continue to lobby for change. Currently, the LDAA is leading the charge in building a comprehensive research database to better understand the true impact of TBDs on public health.

But we can’t do it alone – we need your help.

Data holds immeasurable value in the fight against Lyme and other TBDs. By contributing to our research database, you’re not just sharing information – you’re empowering healthcare professionals, researchers, and policymakers to make informed decisions that can improve diagnosis, treatment, and prevention strategies for TBDs.

Our 2012 Lyme Disease: Australian Patient Experience Survey was the first consolidated collection of data from the Australian Lyme disease patient community. Our goal is to continue the collection and analysis of this data, so that over time we will have a longitudinal study of the experience of Lyme disease patients in Australia.

Why Your Participation Matters:

  • Filling the Gaps: Lyme and other TBDs suffer from a lack of comprehensive data. Your contribution helps fill critical gaps in our understanding of these diseases.
  • Driving Change: With robust data, we can advocate for increased funding, research, and support for Lyme and other TBDs, driving positive change in healthcare and government policies.
  • Empowering Communities: Your participation empowers individuals and communities affected by TBDs, ensuring their voices are heard.

Get Involved

  1. Phase I – Share Your Tick Bite Rash Pic: Images of tick bites and their date and location may further inform an Australian epidemiological picture.
  2. Phase II: If you have a tick bite history or location of diagnosed patient, plot it on the map.
  3. Phase III: Participate in the extension of our 2012/2014 patient survey and share your experience with TBDs. Every story adds depth and insight to the Australian review.