Current campaign: Patients First! #aussielymefight

See also Chronology.

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:

  1. the prevalence and geographic distribution of Lyme-like illness in Australia;
  2. methods to reduce the stigma associated with Lyme-like illness for patients, doctors and researchers;
  3. 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;
  4. evidence of investments in contemporary research into Australian pathogens specifically acquired through the bite of a tick and including other potential vectors;
  5. potential investment into research to discover unique local causative agents causing a growing number of Australians debilitating illness;
  6. the signs and symptoms Australians with Lyme-like illness are enduring, and the treatment they receive from medical professionals; and
  7. any other related matters.
Linda Reynolds – Government Response to Senate Inquiry into Lyme-like Illness in Australia

Submissions

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.


Senate Hearings


Final Report

Senate Inquiry into Lyme-like Illness – Final Report

Several of the Recommended Actions have been carried out, and some are currently underway.

  • A tick survey to better understand which bacteria, viruses and other pathogens are carried by ticks in Australia and their impact on human health. The Commonwealth Scientific and Industrial Research Organisation has been engaged to progress this project. The project is due for completion in mid 2021.
  • A case study biobank to gather and analyse samples from DSCATT patients for possible biomarkers. The Commonwealth Scientific and Industrial Research Organisation has been engaged to progress this project. The project is due for completion in mid 2021.
  • 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.

October 2020
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.

February 2019
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.

January 2019
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”.

April 2018
DSCATT Forum – 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.


 
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