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Tick-Borne Disease Research Program Update – Event October 2022

4 November 2022

We are so thankful to everyone who came along to the update of the Tick-Borne Disease Research Program on the 19th of October. Patients, families and clinicians gathered to discuss activity and outcomes of the program to date. We are excited to back an expert, world renowned multidisciplinary team and work with the NORTH Foundation to support this crucial research into better understanding the source of infection, diagnosis and treatment pathways for patients suffering with potential tick-borne diseases.

ABC journalist Sophie Scott moderated a panel discussion where two patients shared their experiences with tick-borne disease illnesses and how the disease has impacted every aspect of their lives for many years and at times becoming bed-ridden. Two clinicians shared how the team continues to work together to transform the way tick-borne disease is diagnosed and treated in Australia.

The multi-disciplinary team have already selected 46 patients and are now seeing 23 patients so they are well on their way with the study! It’s a long journey but anecdotal feedback is that the clinicians are happy with the progress of the patients.  An additional major legacy from this project will be a bio bank of samples collected that will be made available to other researchers once this research program is complete. In the long term, we hope to change the government’s mind to fund patient-related research as a priority.  We welcome any others that want to join us in supporting this incredible research project.

A very special thank you to:

  • the clinical panel – Dr Richard Schloeffel and Dr Bernie Hudson
  • the patient panel for sharing their personal experiences with Tick-Borne Disease – Ginette Snow, Janet Caddick, Terry Collins, Lee Bollom
  • the moderator and speakers – Sophie Scott ABC. Gilbert Lorquet NORTH Foundation and Georgina Byron AM The Snow Foundation

In Australia, tick-borne disease continues to be a mystery. Patients are confused, with many unanswered questions. A growing number of patients around Australia are suffering from the symptoms of a chronic debilitating illness of which the initial cause remains unknown. However, many associate these symptoms with a prior tick bite and subsequently tick-borne illness or tick-borne disease. Ticks are parasites that feed on animal and human blood and approximately 16 of the 70 species found in Australia are known to feed on humans.

Our knowledge in this country about tick-borne disease is limited as we do not monitor or look for the possibility of the disease being present unless it is within a select set of conditions (such as tick typhus/spotted fever). This is further complicated by the limited diagnostic tests available in Australia which means that potential tick-borne disease is often not recognised or misdiagnosed at first instance. The research team will be undertaking a significant and first of its kind clinical research program which places patients at the centre of the study.

We look forward to sharing more with you as this research progresses, and we encourage you to learn more here.

The lack of validated diagnostic testing in Australia leaves patients with tick-borne illnesses confused and lost in a system that ignores them. It is for this reason that my family and I, through the Snow Foundation, have chosen to support this research. Ginette Snow