CACLD Meeting Notes | 15 July 2014

The Clinical Advisory Committee on Lyme Disease (CACLD) met in Canberra today, for an all day meeting. The committee went over the collated responses to the Scoping Study, the Department of Health’s response to the Scoping Study, and went through all the terms of reference points for the CACLD. There was also discussion on the next steps regarding the recognition of Lyme disease in Australia. Today was the last meeting of the CACLD.

The CACLD was one of several mechanisms for the Federal Department of Health & the Chief Medical Officer of Australia for acquiring advice and information about Lyme disease in Australia. The department has advised us that they will continue to :-

– Consult with the members who made up the CMO’s CACLD (including representatives from the Lyme Disease Association of Australia & the Karl McManus Foundation)
– Monitor progress made in research,
– Act as a point of contact for the community,
– Work on a diagnostic pathway for Australia,
– Work with international partners, and
– Write to patient groups and medical practitioners to update them.

Chief Medical Officer Professor Chris Baggoley wants to assure the Lyme disease community that he is committed to continuing the work of the committee, and that “the future of the committee does not equal the future of the work on Lyme disease in Australia”.

The Department of Health have committed to publish, on their website (over the next 6 weeks):
– the minutes from todays meeting of the CACLD
– a report from the CMO regarding his thoughts on Lyme disease in Australia
– a report on the outcomes of the CACLD against the Terms of Reference for the committee
– the Department of Health’s response to the scoping study (especially in regards to potential research priorities)

As the patient representative I’m happy to answer any questions I am able to (some things are committee-in-confidence & I can’t discuss them, but I’m very happy to discuss everything else). For patients this is a good outcome and the public statements of the CMO will help to legitimize that there are outstanding issues that cannot be immediately resolved but are on their agenda.

The meeting was largely very respectful, even when we were discussing things that people hold opposite positions on, and this was probably the most positive aspect of the day.

Nikki Coleman
Patient Representative