Janice Foster Speech : "Current Political Situation Regarding Lyme In Australia" at the Worldwide Lyme Awareness Protest Sydney Event - May 10th 2013
To read Janice's heartfelt speech about the current political situation regarding Lyme in Australia, please see below. The speech is also available in a downloadable PDF file (opposite) for those that would prefer alternative format.
Janice Foster’s Speech –
Worldwide Lyme Protest: Sydney Event: May 10th 2013
If you are like me,
you’re not well enough to get out much, so it’s doubly lovely to see you all
today, despite the circumstances.
Tomorrow, many awareness
events will be held across the country to raise the profile of Lyme disease. It
is hoped that these will lead to greater understanding in the community of our
condition, the challenges we face, and how the public can minimise the risk of
contracting Lyme themselves.
Our gathering today,
however, is not an awareness event – it is a protest. An earnest protest and a
heartfelt plea to our first world government, for the first world treatment we
have been denied for so long.
As many of you know,
Federal Chief Medical Officer Prof Chris Baggoley has recently established a
Clinical Advisory Committee for Lyme Disease, that aims to investigate the
likelihood of Lyme being locally acquired, and best practices in diagnosis and
We have found Prof
Baggoley to be both responsive and empathetic, and hold high hopes for the
outcome of the committee.
That said, we also
understand that the committee is unlikely to make any recommendations until the
end of this year. And at this stage, we don’t know how long it will take for
those recommendations to be implemented.
In the mean time, Lyme
patients in Australia are facing an unacceptable situation, and we believe it
is the responsibility of NSW Health to put some interim measures in place, for
the protection of NSW residents, and also to act as an example for the health
departments of other Australian states and territories, who frequently
reference the NSW Health fact sheets on Lyme disease.
Many of us feel that Dr
Jeremy McAnulty, NSW Director of Health Protection, has not demonstrated the
level of commitment we expected from him, after Sydney’s first Lyme disease
protest, in September last year.
himself has made it clear that any commitments undertaken by NSW Health in
response to our last protest, are “not a matter for the Commonwealth"
So, to Dr McAnulty we
·Last September, you acknowledged that “Doctors in NSW should keep an
open mind about he possibility that ticks may transmit Lyme disease in NSW ”
and pledged that “NSW Health will review the current Lyme disease resources
available on the NSW Health website to ensure that these do not discourage
clinicians from keeping an open mind about the possibility of locally-acquired
It is not
acceptable that your ‘Lyme disease’ fact sheet STILL encourages bias by stating
without qualification: “When tests are done in places where a disease is rare
or absent (for example, Lyme disease in Australia), many positive tests will be
It is also unacceptable that your ‘Testing
advice for NSW clinicians’ document has a similar message.
·It is not acceptable that the fact sheet references a single flawed
study that found that ticks on the NSW coast don’t have the American species of
Borrelia, ignoring the European species that are more likely, given the
heritage of modern Australia, the number of animals we have imported from
Europe, and the migration patterns of birds in the Northern Hemisphere.
It is also unacceptable that you don’t
reference the five credible studies that found evidence of Lyme in Australia,
in ticks, native animals and humans. One of these studies actually dates all
the way back to 1959.
·It is not acceptable that Lyme patients are presenting to hospitals in
states of physical and emotional distress, only to be engaged in political
debates, and often, turned away without the care they need.
·It is not acceptable that NSW Health has failed to act on the numerous
examples of inappropriate treatment of Lyme patients by medical staff.
·It is not acceptable that there are Lyme patients – including at least
one here at this protest – who are denied professional carers and left to
seizure alone at home every day, risking further injury or even death.
·It is not acceptable that Lyme patients are under huge financial
pressure due to the cost of treatment, including many non-PBS medications.
·It is not acceptable that whilst patients of
other serious illnesses are able to successfully apply to access their
superannuation to help them afford their treatment, Lyme patients cannot.
The Lyme Disease
Association of Australia’s 2012 patient survey found that
·Over 80% of respondents sought help from at least 4 doctors prior to
diagnosis – this is not acceptable
·75% reported difficulty in finding a doctor to treat their condition –
this is not acceptable
·Patients who have located doctors that will treat them travel an
average of 236km for appointments – this is not acceptable
·46% of patients had to quit their jobs – this is not acceptable.
·38% of respondents had contemplated suicide –
this is not acceptable…but it is understandable.
Former LDAA President
Nikki Coleman, has observed “Lyme disease patients are regularly denied
treatment by local doctors, specialists, emergency departments and allied
health professionals, entirely because they have Lyme disease – this level of
discrimination, harassment, and inability to get adequate treatment bares
hallmarks of how HIV and AIDS patients were treated by the medical
establishment in the 1980s”
It is for these reasons
that we are joining 27 other countries worldwide in campaigning for:
·Recognition that Lyme disease and other tick-borne infections are
serious, sometimes fatal illnesses
·Awareness of the fact that the transmission of tick-borne pathogens via
blood transfusion is of global concern
·Agreement that Lyme disease should be listed as a notifiable infection
·Education of the healthcare sector regarding the accurate diagnosis of
Lyme disease, which in some cases may be limited to clinical presentation
·Education of the healthcare section regarding affordable and effective
treatment of Lyme disease and other tick-borne infections
·Independent funding for research into
transmission, testing and treatment of tick-borne diseases
I thank you all for
joining us today in demanding the recognition that we have been lacking for so
long. The battle for fair treatment has been a long one, and realistically, it
is far from won. But as long as people such as yourselves have the passion to
stand up for what is right, I am confident that we will keep moving forward,
and one day, the stories that are now so common, will be history.