PREVENTION | INNOVATION | RECOVERY
Australian patients in disbelief as Government fails to fund
first-of-its-kind project investigating vector-borne illness in Australia
7th January 2019
More than 4,000 Australians with a serious Lyme-like illness are unable to gain access to adequate health care and there is little to suggest that newly funded projects announced over the weekend will address their increasingly debilitating illness any time soon. Experts warn that more funding is desperately required to combat Lyme-like illness in Australia.
In a blow to many Australians suffering from Lyme-like illness, the Australian Government has failed to fund a comprehensive biobanking research project investigating the source and pathology of tick-borne illness in Australia.
According to media reports, the funds have been allocated to dealing with acute cases only, via a project proposed by Murdoch University and a second project from the Austin Hospital which will focus on psychiatric therapies for patients suffering debilitating symptom complexes attributed to ticks (DSCATT).
Neither of these projects address the very real and urgent problem the Senate highlighted more than two years ago when they recommended the government invest research funds into "patient-centric" approaches to medically-appropriate treatment of tick-borne disease as part of their inquiry into tick-borne illness.
According to media reports, newly funded research is expected to take up to five years to complete, which is hardly helpful to the thousands of patients who are already suffering.
Patients are demanding to know whether Minister Hunt signed off on this decision as he has been assuring patients his government is serious about the issue. Patients have lost faith in this government and are questioning whether the NHMRC understands the plight of over 4,000 medically stranded patients. This is an AIDS-like epidemic and patients including children are being turned away from vital treatment.
The LDAA supported a research submission by Professor Gilles Guillemin, neuroscientist, lead researcher and Chair of the LDAA’s Scientific Advisory Committee which proposed a personalised medicines model, in collaboration with doctors in Australia including Dr Richard Schloeffel OAM, Dr Bernie Hudson, Royal North Shore Hospital and esteemed scientist Prof Edward Holmes, Sydney University along with other eminent international collaborators. The project would have been the first to establish a nation-wide comprehensive biobank of Lyme-like illness samples and would have provided answers for patients quickly.
“We were extremely saddened to hear this announcement regarding the non-funding of the proposed biobank project, but we still hope to use the established groundwork as a way to spearhead this type of research in Australia in the future,” expressed Dr Richard Schloeffel, OAM.
The research team say that developing biomarkers – chemical identifiers in the body that indicate the presence and severity of an illness – for Lyme-like illness would be a huge step forward in understanding and combating the condition in Australia, enabling our health system to formally recognise the illness and offer faster treatment options for patients.
Instead the Government, who has not officially announced the funding outcome, provided information exclusively to the Sydney Morning Herald indicating that two projects would be funded.
The first project allocates $1.9M in funding to Murdoch University. Under the leadership of Professor Irwin and Professor Ryan, the Murdoch team has been studying ticks for the past few years using next generation sequencing to isolate several known pathogens in Australian ticks and uncover multiple new and novel species whose capacity for causing illness in humans is unknown.
The Murdoch research will focus on a prospective study of up to 1000 people who are recruited via hospitals and GP clinics while at the acute tick bite stage. We are encouraged that this type of research may help us better understand the situation for people with acute tick bites.
According to the media, a further $1M has been awarded to an Austin Hospital Psychiatry Professor to trial psychotherapies like cognitive behavioural therapy (CBT) as a treatment to fix us all. Professor Kanaan will "define" those with DSCATT, something that has eluded the Australian Department of Health for some years, and then “develop a way to measure their symptoms”.
Apparently, a randomised controlled trial of cognitive behavioural therapy, meant to treat psychological conditions not systemic infectious diseases, is planned for up to 120 patients. Prof Kanaan states “the problem is as long as the causes are unexplained”. The LDAA contends that the problem of Lyme-like illness in Australia is one of ignorance where the situation for patients remains unexamined and medically undiagnosed rather than unexplained. It seems that the Austin Hospital research will follow a known trajectory in telling patients that their illness is ‘all in their heads’; a position already articulated by the organisation.
Meanwhile, international Lyme disease experts shake their heads at this announcement. Dr Robert Bransfield, the world’s leading psychiatrist experienced in treating those with vector-borne disease, says “no illness is caused by nothing and mental illness is never a diagnosis by default”. In his research he quotes hundreds of articles that associate long term, persistent tick-borne infections with mental illness, but questions the utility of CBT while the underlying infectious process is disregarded, “it’s a perfect storm of ignorance” says Bransfield.
“The senate enquiry in 2016, which spurred the Government into developing the Targeted Call for Research, found that there were significant numbers of Australians awaiting treatment for vector-borne illnesses, with one clinic reporting 800 people on their waiting-list,” said Lyme Disease Association of Australia’s (LDAA) President, Marie Huttley-Jackson.
“Further, none of these initiatives address tick bite awareness and prevention, so the number of Australians who become sick following a tick bite will continue to rise unchecked.” Ms Huttley-Jackson adds.
“It is imperative that we not only help those already suffering with Lyme-like illness in Australia, but also add to the knowledge worldwide”, says Ms Huttley-Jackson.
Experts say that a comprehensive biobank is an essential component in combating the illness in Australia, and that we should be following the lead of other European countries and the US in developing a biobanking program. Doctor Armin Schwarzbach of ArminLabs Germany has already analysed hundreds of Australian samples which are positive for infections with Borrelia burgdorferi and strongly recommends the biobank strategy for Australian samples. “We need to start systematically testing samples from all Lyme-like illness patients in Australia and getting to the bottom of this illness”, says Schwarzbach.
Dr Richard Horowitz, a physician specialising in tick-borne diseases, was also saddened to hear about the lack of funding in Australia for tick-borne illness. Dr Horowitz has seen over 13,000 chronically ill individuals with tick-borne diseases, including many Australians, and testified twice before the Australian Parliament on the use of a precision medical model that has significantly helped his patients. "Multifactorial causes of chronic disease are becoming the norm, not the exception", said Dr Horowitz, and it would be in the interest of the Australian people and Australian government to expand their present model of diagnosis and treatment of chronic disease to help relieve suffering and lower rising health care costs"
“Historically, there has been a lot of misinformation around Lyme-like illness in Australia, and $3M in funding provided to programs that address only part of the issue is woefully inadequate. The Government really needs to urgently allocate additional funds to answer all the questions” concluded Ms Huttley-Jackson.
Media spokesperson: Sharon Whiteman, Anne Ryan LDAA Board
Additional resources for media are available from the Lyme Disease Association of Australia’s website here.
The Lyme Disease Association of Australia (LDAA) commenced operations in 2009. Since that time, we have evolved into a powerful organisation with the assistance of many volunteers who are passionate about awareness and education, and ultimately eradication of the illness, which can be debilitating, life changing, and in some cases deadly. To learn more about symptoms, please visit this page, and if you are concerned about your health and would like support please contact us.
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