See also Chronology.
The LDAA is continuing to brief, and garner the support of Australian Senators and Members of Parliament, as well as posing relevant questions via Senate Estimates.
2021 – 2022
Throughout the Email Your MP (Patients First) campaign, following up on patient/supporter emails to MPs, we briefed Members of Parliament on the current situation for Lyme patients in Australia.
Speaking directly with MPs, we discussed our Senate Inquiry Twelve Recommendations: LDAA’s Progress Report regarding Government in/action on the 12 Recommendations from the Senate Inquiry Report.
- CSIRO’s Tick Survey published – “Metatranscriptomic profiling reveals diverse tick-borne bacteria, protozoans and viruses in ticks and wildlife from Australia”
- “Preliminary findings” from CSIRO’s tick biomarker research in Australia released. The Department of Health has engaged CSIRO to expand on the findings of the tick survey and tick biobank projects. This research project is underway with results expected in 2024.
In 2021 the LDAA released our official response to the Department of Health’s Disabling Symptom Complexes Attributable to Ticks (DSCATT) Clinical Pathway. This was endorsed by over 60 international Lyme scientists, clinicians and advocates. It has been formally submitted to the Australian Minister for Health, as well as media outlets and many other stakeholders.
Disabling Symptom Complexes Attributed To Ticks (DSCATT) Clinical Pathway published by the Department of Health. This document, a guide for clinicians regarding patients presenting with tick-borne illness, makes Lyme diagnosis and treatment in Australia even more challenging. Find out more about the Clinical Pathway on the Australian Lyme page.
Department of Health approached the market seeking a suitable supplier to “increase the knowledge of medical professionals and the public on tick-borne illnesses that are acquired in Australia and overseas, as well provide information on tick bite prevention and safe tick removal methods.” Consultation with stakeholders about the processes involved was undertaken in December 2020.
National Health and Medical Research Council Targeted Research Call announces they’ve allocated $3m DSCATT funding to 2 projects expected to report in 2023.
- Murdoch University’s Troublesome Ticks Research Project – This study enrols newly tick-bitten people, preferably the tick would still be embedded. The patients are tested within 72 hours of the bite, one week later and 3 months later.
- University of Melbourne’s Developing a [Psychiatric] Treatment for DSCATT – This study assumes that the causes of “DSCATT” are unclear. “With similar conditions, effective therapies have been developed even though the causes are unclear. This project would extend that approach to DSCATT”.
DSCATT Forum (April) – A consensus was not reached on how to refer to “Lyme-like illness in Australia” so the Department of Health will use Debilitating Symptom Complexes Attributed to Ticks (DSCATT). The LDAA opposes this term.
Lyme patients who suffer from mould illness/Chronic Inflammatory Response Syndrome (CIRS) may also be interested in the 2018 Senate Inquiry into Biotoxin-related Illnesses in Australia
2016 Senate Inquiry
The LDAA and Lyme patients all over Australia welcomed the 2016 Senate Inquiry into “The growing evidence of an emerging tick-borne disease that causes a Lyme‑like illness for many Australian patients” as a long-awaited opportunity for genuine dialogue and positive change regarding Lyme in Australia.
The terms of reference were:
- the prevalence and geographic distribution of Lyme-like illness in Australia;
- methods to reduce the stigma associated with Lyme-like illness for patients, doctors and researchers;
- the process for diagnosis of patients with a Lyme-like illness, with a specific focus on the laboratory testing procedures and associated quality assurance processes, including recognition of accredited international laboratory testing;
- evidence of investments in contemporary research into Australian pathogens specifically acquired through the bite of a tick and including other potential vectors;
- potential investment into research to discover unique local causative agents causing a growing number of Australians debilitating illness;
- the signs and symptoms Australians with Lyme-like illness are enduring, and the treatment they receive from medical professionals; and
- any other related matters.
The Lyme Disease Association of Australia represented patients at this important inquiry into Lyme in Australia. There were 1,268 submissions to the Senate Inquiry.
Final Report 2016
- Senate Inquiry – Final Report
- Australian Government’s response to the Final Report
- Final Report’s 12 Recommended Actions
Several of the Recommended Actions have been carried out, albeit inadequately, and some are currently underway.
One recommendation was for a one-off grant to the Lyme Disease Association of Australia for the provision of patient advocacy and crisis counselling services for patients presenting with DSCATT. This support program has concluded, it was unable to continue due to lack of further funding.
Copyright Lyme Disease Association of Australia