- Counter Arguments and Responses
- House of Representatives Standing Committee on Health
- Targeted Call for Research
- Parliamentary Friends of Lyme
- Clinical Advisory Committee on Lyme Disease
- Patient Surveys and Statistical Collection
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.
- LDAA's questions to government in regards to the NRL Report on testing - submitted 4th December 2017
- LDAA's statement to the Government response issued 24 November 2017
- LDAA's Counter-argument in response to the Royal College of Pathologists of Australasia position statement on Lyme Disease.
- LDAA's response to the Department of Health's statements on Lyme Disease issued 29 May 2015.
On 18th September, 2016 the Lyme Disease Association of Australia (LDAA) President Sharon Whiteman attended a Federal Government Round Table Hearing of the House of Representatives Standing Committee on Health, in relation to Lyme Disease, as a part of the Inquiry into best practice in chronic disease prevention and management in primary health care.
Terms of Reference for the Inquiry
To inquire into and report on best practice in chronic disease prevention and management in primary health care, specifically:
- Examples of best practice in chronic disease prevention and management, both in Australia and internationally;
- Opportunities for the Medicare payment system to reward and encourage best practice and quality improvement in chronic disease prevention and management;
- Opportunities for the Primary Health Networks to coordinate and support chronic disease prevention and management in primary health care;
- The role of private health insurers in chronic disease prevention and management;
- The role of State and Territory Governments in chronic disease prevention and management;
- Innovative models which incentivise access, quality and efficiency in chronic disease prevention and management.
- Best practice of multidisciplinary teams chronic disease management in primary health care and hospitals; and
- Models of chronic disease prevention and management in primary health care which improve outcomes for high end frequent users of medical and health services.
Also attending were researchers, members of the medical community, treating doctors, patients, representatives from the Federal Government’s Department of Health and the Country Women’s Association of NSW. The Round Table focused on the incidence, diagnosis, and treatment of Lyme disease or Lyme-like illness and heard from seven patients about their experiences of fighting Lyme disease and co-infections whilst navigating a discriminatory medical system.
Federal Members of Parliament were visibly moved by the stories told by patients struggling with Lyme disease in Australia and asked hard hitting questions especially of the Department of Health representatives, the Royal College of Pathologists, and the Australasian Society of Infectious Diseases. Parliamentary Committee Members the Hon Ken Wyatt, Member for Hasluck (WA) and Mr Stephen Jones, Member for Whitlam (NSW), in particular, grilled the Department of Health on what they were doing for Lyme disease patients in Australia. They considered the inaction to that of the HIV/AIDS epidemic and the long-time denial of the Helicobacter Pylori research into stomach ulcers (Robin Warren, a pathologist from Perth, Australia and Barry Marshall, clinical fellow were awarded the 2005 Nobel Peace Prize for their discovery of the bacterium and its role in gastritis and peptic ulcer disease), with Ken Wyatt stating that he found it “negligent that we are having a debate around this issue” whilst patients are suffering, to the clapping and cheers of the Lyme patients present in the public gallery.
Listen to the full audio of the proceedings here and written hansard version here.
The Lyme Disease Association of Australia represented patients in this call for research priorities. You can view the submission in full here
The inaugural ‘Parliamentary Friends of Lyme’ and Lyme-like symptoms was co-convened by Senator Zhenya (Dio) Wang (WA), Senator John Madigan (Victoria), and Senator Claire Moore (QLD) in Canberra on 15 March, 2016. A broad selection of Parliamentarians and their staff were invited to attend to learn more about Lyme disease. ‘Parliamentary Friends’ meetings like this work on a ‘pop in - pop out’ kind of affair – if people are busy elsewhere they don’t have to stay the full two hours, they might pop in and ask a few questions then leave, or they may stick around and hear all of the presentation.
Media attended (WIN Canberra) and aired a story that same night which aired interviews with Dr Richard Schloeffel and Lyme patient, Hannah Coleman. Watch it here.
Representatives of the Lyme Disease Association of Australia (LDAA) and Dr Richard Schloeffel (a Lyme-literate doctor) of the Australian Complex Infectious & Inflammatory Diseases Society (ACIIDS) spoke powerfully on our behalf and those attending took notice. Dr Schloeffel presented case studies, stories, and referenced this with his experience of 40 years being a general practitioner both here and overseas dealing with other emerging epidemics. He compared Lyme disease to AIDS and believes we need an advertising campaign as compelling as the AIDS campaign was.
There was a question and answer session. Some of the MPs were asking relevant questions and showed genuine interest and others had met patients previously so were aware of the condition. The meeting was attended by representatives from all parties of Government. A draft video of the presentation is available here with the Q&A session here.
The LDAA made two presentations, one included the latest exciting outcome of Lyme World; the news in January, 2016 that Australia’s National Association of Testing Authorities (NATA) became a signatory to the International Laboratory Accreditation Cooperation (ILAC) Mutual Recognition Arrangements (MRA) based on the international standard for medical testing - ISO15189. This effectively allows NATA to recognise by reciprocal agreement, the other international signatories to this agreement. Infectolab is one of those signatories, with a large number of Australians who test positive. The LDAA's President, Sharon Whiteman made a presentation at the meeting, as did one of our volunteers Marie Huttley-Jackson.
The meeting also included a mingle session. During the mingling Bob Katter (Member for Kennedy, Qld) was very popular with a couple of patients wishing to tell him their story. Unfortunately, the Health Minister, nor the Opposition’s Health Minister did not attend, however following the meeting the LDAA met with the Shadow Health Minister, Catherine King, followed by a meeting with the Adviser to the Health Minister Susan Ley, arranged by a patient.
At close to midnight that same night, Senator John Madigan, Lyme warrier, gave an impassioned speech in the Senate on behalf of all Lyme patients. Watch it here.
The following day, Allanah MacTiernan, (Member for Perth, WA) spoke powerfully in support of LDAA's work, and the plight of patients in the House of Representatives. She was backed by Steve Irons (Member for Swan, WA), who congratulated her support of the Lyme disease cause. The written Hansard of Ms MacTiernan's speech is here and video here.
The LDAA wishes to thank those politicians who attended and are committed to helping Lyme-like patients in Australia.
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.
The LDAA’s full submission:
Other Association and Group submissions:
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.
- 2013/14 Lyme Disease - Australian Patient Experience in 2013 (Coming soon - but check out our statistics section for an initial visual representation)
- 2011/12 Lyme Disease - Australian Patient Experience in 2012.