TOO LITTLE: Tick Awareness Australia founder Francene Lee Taylor says it'll take a lot more than $3m to 'right the wrongs and get on with research to figure out treatments for patients'.
TOO LITTLE: Tick Awareness Australia founder Francene Lee Taylor says it'll take a lot more than $3m to 'right the wrongs and get on with research to figure out treatments for patients'. Marc Stapelberg

$3m to target tick bite illnesses 'not good enough'

WITH hundreds of Northern Rivers residents "seriously ill from tick bites", funding to combat tick-borne diseases has been deemed inadequate by patients and experts alike.

The federal Government has announced almost $3 million in funding for two projects aiming to reduce the debilitating symptoms attributed to tick bites.

The $3 million will be invested over five years for research to better understand the causes of these symptoms, with the longer-term aim of developing treatments, but the Lyme Disease Association of Australia, patients and experts believe the "seed funding" is not nearly enough.

A tick-borne disease in Australia is thought to be Rickettsia and Babesia microti, with the most widely-known being Lyme disease.

Patient advocate and long-time "Lyme and other tick-borne disease sufferer," Francene Lee Taylor said while the funding was "a step in the right direction" it was "no where near enough."

"It's great the government is finally taking some steps to assist the situation, but it will take a lot more money than that to right the wrongs and get on with research to figure out treatments for patients," Mrs Lee Taylor said.

"There needs to be independent research done, with funding that's totally separate from the government."

The Ocean Shores resident said the Northern Rivers was a known "high-risk tick area".

"I talk to hundreds and hundreds of patients that are seriously ill, obviously from tick bites, they go to doctors and aren't getting treatment," Mrs Lee Taylor said.

"I am concerned about the patients who are already very ill like me - who have slipped between the cracks and have not been treated - or have been tested in Australia and are not getting reliable results back from labs.

"A lot of these people will either die or have lead long-suffering lives. They either lose their homes, spouses and families. Many can't afford to seek treatment overseas.

"It's tragic what's happening to the people who have been suffering long-term. Many have been ostracised laughed at and humiliated by the medical profession."

She said Northern Rivers doctors were more open to the possibility of tick-borne related diseases.

The Tick Awareness Australia founder said her focus was managing her own ongoing symptoms and campaigning to raise awareness about prevention.

"I want to save lives, and any support from the community is welcomed," she said.

"I have written a childrens program for prevention to teach children about ticks which will be implemented in the region this year. I've had signs made and I want the council to allow us put signs up in this area, in strategic places, warning people that it's a high risk area for ticks."

Sharon Whiteman from the Lyme Disease Association of Australia said more than 4,000 Australians, including North Coast residents with a serious Lyme-like illness couldn't gain access to adequate health care and the new projects would not address their "increasingly debilitating illness any time soon."

"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) ," Ms Whiteman said.

"They don't address the 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.

"The research is expected to take up to five years to complete, which is hardly helpful to the thousands of patients who are already suffering."

She said it was disappointing the Australian Government had failed to fund a comprehensive biobanking research project investigating the source and pathology of tick-borne illness in Australia.

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.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,"  said Dr Richard Schloeffel, who was part of the team involved in the research submission by Prof Guillemin.

Director of the Tick-Borne Diseases Unit, School of Medical Sciences (Pharmacology), University of Sydney and Founder of The Karl McManus Foundation Dr Mualla Mcmanus believes more funding is needed.

"Thousands of people in Australia currently ill after a tick bite and because DSCATT is an emerging disease $3mil is probably seeding funding," Dr McManus.

"Both successful applicants should publish their results -negative and positive outcomes."



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