Download meeting minutes - Lyme Disease Association of Australia

MEETING MINUTES
Meeting:
Date/time:
Attendees:
Apologies:
Lyme Patient Consultative Group
Thursday 23 January, 10:00AM, AEDT
Nikki Coleman – CACLD Patient Representative
Sharon Whiteman – LDAA President
Dr Gary Lum – Office of Health Protection, and CACLD’s governmental Point of
Contact
Dr Jennie Hood – Office of Health Protection secretariat
Janice Foster – LPCG Administration
Con Torrisi – BITE Patient Representative
Sara Walker– LymeLinks Patient Representative
Elaine Kelly – Sarcoidosis Lyme Australia Patient Representative
David Stevens – Lyme Australia and Friends Patient Representative
Aaron McCauley– Sunshine State Lyme Network Patient Representatives
Karen Smith – Lyme Australia Recognition and Awareness
Rosie Payne– Western Australian Lyme Association Patient Representative
Hannah Seward – Lyme NT Patient Representative
Jennifer Sherer – LDAA Patient Representative
Ailsa Burgess – Chrysalis Patient Representative
No.
Agenda item
1 Welcome and code of conduct
Welcome to all representatives, as leaders of the Lyme community. A
special welcome to our special guests from the Department of Health,
also.
The LPCG was established based on a suggestion from a patient, to
ensure all groups feel that their input is valued and acknowledged by a
central collaboration point.
Nikki, whilst having significant Lyme experiences (all of her family has
the disease) has been feeling the weight of responsibility in being the
sole CACLD patient representative; as a result, she is particularly
grateful to everyone for sharing the load and the points of view of their
members.
The Lyme situation in Australia is currently undergoing a revolution,
Lead speaker
Sharon Whiteman
Nikki Coleman
making it a very emotive time. Let’s commit to focusing together, to
ensure we make the most of the resulting opportunities.
Meeting participants are encouraged to read and adhere to the Code of
Conduct; Sharon has 25 yrs experience in leadership roles, and has
found the code to be essential in ensuring everyone understands what
is expected of them and each other.
The conference number is available for a maximum of 2 hours only, so
participants are urged to be mindful of the time.
Participants should announce themselves by name before speaking.
Whilst ideally the meeting would be recorded, unfortunately standard
government regulations don’t allow this when government members
are present.
2
Introduction of participants
Each participant shared Lyme history or connection to Lyme, content
removed for privacy/permission reasons.
All
Jennie Hood: Her role is as a support for Dr Lum. She works for the
Office of Health Protection in the Emerging Infectious Diseases area.
Gary Lum : The Medical Advisor to the CMO, and CACLD’s governmental
Point of Contact.
3
CACLD/CMO Briefing
Dr Lum is grateful for the invitation to attend the inaugural LPCG
meeting.
The Chief Medical Officer of Australia, Professor Chris Baggoley, was
first approached regarding Lyme by NSW CMO Dr Kerry Chant, in late
2012. Dr Chant acknowledged that NSW Health had taken the lead on
responding to queries about Lyme, but felt that now that more reports
of Lyme diagnoses were being made in other states, a national focus
was required.
Dr Lum was asked by the CMO on 21 January 2013 to begin researching
the situation regarding Lyme in Australia. The CACLD was created in
March 2013, and Dr Lum described it as a group of people with a
background in Lyme, or pertinent to Lyme, who can provide advice to
Prof Baggoley. He stresses that the CACLD is not a decision-making
body.
Prof Baggoley is also able to seek advice from additional parties, if
desired.
Part of Dr Lum’s role is to establish networks with these additional
parties, which also include, for example, IGeneX, the CDC, and the Rare
and Imported Pathogens Laboratory in the UK.
Dr Gary Lum
Whilst the CACLD was initially anticipated to be a short term advisory
committee, it has now been realised that the scope and complexity of
Lyme is greater than first thought, so the committee is continuing to
meet, with no current end date estimated.
That said, some of the issues identified (controversy with IDSA, ILADS,
symptomatology etc) are too broad for the CACLD’s scope; the focus
remains on 3 key points:
1) Establishing whether there is an indigenous strain of Borrelia in
Australia, and identifying competent vectors
Dr Lum is particularly interested in our viewpoint on research priorities
which have been suggested in the scoping study report.
2) Diagnostic pathways
There is a small working group looking into various lab approaches, and
clinical presentation of patients with Lyme-like illnesses. Infectolab is
part of this workgroup, but IGeneX are not.
If a case definition can be established for doctors and epidemiologists,
including evidence for an indigenous causative agent, the possibility of
Lyme disease being a notifiable disease increases.
3) Optimal treatment protocols
Work on this area hasn’t begun yet, but will be a major focus this year.
The CACLD and Zoönoses, Foodborne and Emerging Infections section
(of the Health Emergency Management branch) will collaborate; a lot of
work will come out of the Office of Health Protection (OHP is the
division in the department which contains HEM branch which contains
ZOFE section).
The committee also provides information/education to health
practitioners.
Dr Lum says the department’s budget has been tightened. This has had
broad implications, including staff cuts.
Funding remains available for research such as the research suggestions
recommended in the Scoping Study – interested parties, particularly
medical researchers, can apply for grants through the NHMRC and
other funding bodies, e.g., the Australian Research Council. It is
envisaged that approval and funding will be heavily influenced by the
research priorities set by the National Health and Medical Research
Council. The Council’s membership includes the CMO plus state and
territory CHOs. Grants are usually for a period of up to 5 years through
the NHMRC.
Based on this potential timeframe for research completion, there is no
estimate for when conclusions regarding Lyme disease in Australia will
be reached.
That said, any published research that reaches a conclusive outcome in
the mean time, would be considered by the Australian Health
Protection Principal Committee, regardless of its funding source. (The
CMO and/or CACLD are not in a position to determine if a disease is in
Australia.) Examples of current research include that of Dr Peter Irwin’s
work on tick vectors.
Even if no evidence of a causative organism is found as a result of
research grants resulting from Scoping Study, research groups may
continue to apply for grants from organisations like the Australian
Research Council and the NHMRC.
Researchers are welcome to apply for funding to look into particular
preferred areas of study; such as whether Lyme disease can be sexually
transmitted.
The reason the Scoping Study specifically references NSW and WA, is
due to the location of current groups conducting research, including Dr
Irwin, although their research is being conducted nationally.
Some meeting participants expressed concern regarding the inclusion
of the Westmead lab; the Lyme community generally have a lack of
trust of this lab, due to perceived disrespect (including members of the
lab presenting papers with titles such as “Lyme disease in Australia: the
real deal or a real lemon”). Behaviour such as this by members of the
lab create a conflict of interest in regards to providing unbiased views
on Lyme disease in Australia. Elaine reports being told by a doctor at
the lab that he was in regular contact with a member of the CACLD, and
that under no circumstances would he consider a Lyme diagnosis, even
for a patient such as herself, with an extensive overseas travel history.
Other members of the group expressed frustration at ICPMR refusing to
test their blood for Lyme disease.
Dr Lum explained that the ICPMR has recently been reviewing Lyme
disease assays from Europe and other centres, and he believes this will
have a positive impact. He also says that as Westmead lab is considered
a primary and well respected lab, it would be difficult to exclude them.
When Karen raised concerns regarding outdated diagnostic techniques
at Westmead, Dr Lum acknowledged that interpretation of tests is
being investigated, and European diagnostic guidelines considered.
Karen questioned why Babesiosis is not being actively tested for, given
that Babesiosis is acknowledged both overseas and in Australia as a
pathogen that can cause human infection.
Dr Lum says that the Babesiosis situation is looking more positive, given
the confirmed report of an infected patient in Canberra. If, as Karen
suggests, two strains of Babesiosis known to be in Australia, aren’t
being identified through testing, researchers may apply for grants to
explore this.
Brazil has recently been in a similar situation to Australia; in that a
Lyme-like disease was present, but there was difficulty in
identifying/culturing indigenous Borrelia. Authorities decided to call
the disease by a different name (Baggio-Yoshinari syndrome), so that
progress could continue. Dr Lum says that if someone was to formally
propose such an approach in Australia, it would be considered.
Con queried whether there was a proposal (either as a policy or
legislative change) to put forward a moratorium on doctors who have
misdiagnosed other diseases instead of Lyme, and that after a certain
point this amnesty would cease, and doctors who misdiagnose patients
with other diseases who in fact have Lyme disease would be
investigated and potentially sanctioned by medical registration bodies.
Dr Lum is not involved with regulation of health practitioners in that
way; the regulation of health practitioners rests with AHPRA. Con will
raise with the Health Minister, and advise Dr Lum of the outcome.
Dr Lum and the CMO met with some of the ACIDS doctors, Jenny
Bourke, and Con last year for discussions. As a result, the CMO is
considering further meetings, such as a clinical treatment meeting
involving ACIDS doctors, and representatives from the Colleges of
General Practitioners, Pathologists, Infectious Diseases Specialists,
Neurologists, Rheumatologists and Psychiatrists.
Dr Lum can be contacted via email at [email protected].
Dr Lum & Dr Hood exited meeting at this point.
4
Patient review of Scoping Study
All were disappointed with the Scoping Study document – Nikki had
been promised it would be fair minded, but it is missing a lot of relevant
information, contains inaccuracies, and doesn’t address the current
antagonistic relationship of parties at opposite ends of the spectrum
both internationally and in Australia.
Concerns were also raised regarding the “cherry picking” of the studies
that were referenced, and the conflict of interest that was not disclosed
by the author (e.g. he has published a paper with Russell and Doggett).
Nikki plans to request through the CACLD for the author to release a
revised version, addressing these issues – accuracy is very important,
particularly as this document may be referenced in workers’
compensation cases etc.
Everyone is encouraged to provide feedback - they don’t need to
represent a group, or be an expert. Feedback doesn’t need to be
written up formally, it may be simply communicated in a short email to
Dr Lum.
Nikki/All
Dr Lum can provide extensions to the 31 January deadline if required.
The LDAA are finalising their submission, based on feedback on their
‘Task Force Lyme’ Facebook group. Huge thanks to all (approx 120)
contributors.
Elaine, Karen and Sara will also be submitting reviews on behalf of their
groups.
Con has met with 2 ACIDS doctors for feedback, and will collaborate
further with Rosie if required to write up the BITE response to the
scoping study.
Members of the LPCG are encouraged to email the LDAA a list of 5-10
key points of feedback, by 31 January – the LDAA will consolidate these
and send to Dr Lum by 7 February on behalf of the LPCG (after securing
an extension).
5
Scoping Study research priorities
Nikki needs to know how each group prioritises the below research
areas, so she can effectively vote on behalf of the Lyme community at
the next CACLD meeting.
Nikki/All
1. Experimental programme to determine whether there is a
Borrelia species in ticks in Australia causing Lyme-like disease,
or whether another tick-borne pathogen is involved in humanLyme-like disease
2. Are Australian ticks competent to maintain and transmit
B.burgdorferi s.l. genospecies, or other Borrelia species
associated with relapsing fever?
3. Do we have the best reagents for detecting novel Borrelia
species, including B. miyamotoi, especially in clinical
specimens?
4. Clinical studies of patients presenting with symptoms
suggestive of Lyme or Lyme-like disease
5. Retrospective investigation of chronic cases of Lyme borreliosis
The general consensus was that number 4 was the top priority,
followed by number 5, then number 1.
However, representatives asked for more time to consult with their
groups on this topic.
6
Terms of Reference review
Due to time constraints, this agenda item will be covered during the
next meeting.
Nikki Coleman
7
Issues to be raised to CALCD by Nikki
No urgent issues were raised, but this agenda item will also be covered
during the next meeting.
Nikki/All