CACLD Meeting Notes | 27 November 2013

Clinical Advisory Committee on Lyme Disease (CACLD)

Nikki Coleman, LDAA Patient Representative

The Chief Medical Officer of Australia, Professor Chris Baggoley stressed that there are a large number of people in Australia who’s lives are miserable because of the Lyme disease or Lyme-like illness that they suffer. For some it has completely altered their lives and that of their family, impacting on their health, their work, their social lives and the finances. It is these people who are the focus of our work and inspires the CMO to keep working on this problem, and we need to honour the experience of Lyme patients around Australia as we do this important work.

The CACLD was set up as a time limited committee to finish at the end of 2013, however, clearly the work will not be finished this year and as it is very important will continue into 2014.

The CACLD received the report of the scoping study by Professor John Mackenzie. This report will be uploaded to the CMO’s webpage in the next few days, and the CMO invites people to respond to the report. It will also be sent to all the Chief Health Officers of each state and territory around Australia to comment on. The CACLD discussed their views on the report (Nikki highlighting the factual error in the introduction, about how many people the US CDC believes are diagnosed with Lyme disease in each year in the US & other members pointing out some other concerns). The CACLD gave the CMO feedback on which of the 5 recommendations are the most important – so that if funding is limited, then the most important research can be done first.

The CMO noted that for those people who believe that Lyme is in Australia the research proposed seems unnecessary. But for those who are not yet convinced that Lyme is in Australia, the research is vital to helping them come to a new understanding of Lyme disease. The research is also vital in being able to lobby government departments such as the Pharmaceutical Benefits Scheme to cover medications for Lyme disease patients in Australia.

The CMO is inviting people to provide him with feedback about the Scoping Study, particularly in relation to the 5 recommendations. Details on how to do this will be on the DOHA website – after the scoping study is uploaded in the next few days

The Diagnostic Working Group of the CACLD is continuing to work on a diagnostic pathway that can be used by medical practitioners in Australia to diagnose Lyme disease patients. It is hoped that these guidelines will be presented to the CACLD for comment early in 2014, and will be given to the CMO for his consideration.

Some new activities of the CMO & his department for 2014
– a meeting of pathologists working on Lyme disease in Australia to bench mark laboratory processes.
– A meeting of medical practitioners (LLMD’s, neurologists, rheumatologists, GP’s etc) who are working with Lyme patients in Australia to discuss Lyme disease.

Nikki proposed that a Patient Reference Group be set up, so that the views of the increasing number of patient groups be heard, and so that information may be more easily disseminated through the Lyme community about the work of the CACLD and CMO on Lyme disease. Nikki proposed that the LDAA, KMF, BITE, MAD, Sarcoidosis-Lyme Australia, & the various support groups in VIC, ACT, NSW, QLD, and WA might provide a representative for this reference group. The CMO thought that this idea had merit and will explore the practicalities.

It was stressed that the CACLD and CMO needs to communicate to the wider Lyme community what progress is being made, and what are the next steps that they are working on.

It was also stressed that the need for prevention of tick bites is paramount, and the CMO will be putting links to this on the DOHA Lyme disease page in the near future.

If you have any questions, please feel free to ask – I’ll do my best to answer them ☺ Cheers, Nikki Coleman, patient representative, CACLD