Scientific Advisory Committee

Local and international biomedical and clinical medicine experts have formed a Scientific Advisory Committee (SAC), in conjunction with the Lyme Disease Association of Australia (LDAA), to inform the Australian government, healthcare sector, insurers, and community at large of the need for proper treatment regimens of Lyme-like and vector-borne illnesses in Australia and compassion for Australian patients caught up in policy delays that restrict treatment options.

The SAC will help to inform the Department of Health, the National Health and Medical Research Council’s priority research, and funding areas in order to steer and contribute to the national agenda into Lyme and other vector-borne diseases. The LDAA believes we need to make sure that the world’s best practice healthcare is available to Australians, particularly those already affected in Australia.

More than 4,000 Australians have managed to get diagnosed in the Australian healthcare system – most having waited for an average of 10 years before receiving an accurate diagnosis –  are struggling to obtain adequate care due to a lack of health policy around vector-borne diseases in Australia, with USA modelling statistics indicating that the current number of Australians who’ve contracted the illness, but remain undiagnosed, could be around ten thousand each year.

While each Australian state has recorded cases, Sydney (particularly the Northern Beaches), Melbourne, Perth, and Brisbane along with the south-east coast are among the regions with the highest recorded rates of locally-acquired illness, with children, outdoor workers, day trippers and people with an outdoor lifestyle among those at highest risk.

SAC members

  • Adj Prof Leona Gilbert PhD (Chair) – University of Jyväskylä;
  • Dr Richard Horowitz (our Patron), board certified internist and medical director of the Hudson Valley Healing Arts Centre, will be providing strategic advice to our SAC;
  • Prof Christian Perronne, Professor of Infectious and Tropical Diseases at the University of Versailles-St Quentin (UVSQ), Paris-Saclay, France;
  • Dr John Duley, expert in diseases of metabolism, and individual responses to drugs (pharmacogenetics); 
  • Jennie Burke, Medical Scientist; founder Australian Biologics Pathology;
  • Dr Lance Sanders, BSc, Hons, PhD, MASM; Dept of Health Microbiologist (retired); Specialist in Infectious Disease and Toxicology;
  • Dr Richard Schoeffel OAM, MD, Specialist GP in chronic diseases;
  • Dr Bernie Hudson, Head of Infectious Diseases, Royal North Shore Hospital; 

We are seeing an increased number of cases of Lyme and other vector-borne illnesses in Australia every year.  In fact, the Australian Senate Enquiry revealed that there are a significant number of people still waiting to be treated and one clinic reported another 800 people on their waiting-list.  

Tick and vector-borne diseases are on the radar for many scientists, given the systemic role they play in infection of tissue, blood, and organs, and their potential impact in neurodegenerative diseases.

The Priority of the SAC

The first priority of the SAC will be to build a cohort of cross and multi-disciplinary teams and establish a world class, innovative, national plan for the treatment of patients with, and stemming the spread of, Lyme-like illness in Australia. Making tick borne disease a notifiable disease in the Australian healthcare system will help to build the risk profile of tick bites and allow the national impact of such diseases to be better understood.

The issue, experts say, is that due to a global epidemic a greater number of Australians are now being diagnosed with Lyme-like illness, meaning healthcare policies need to reflect the situation as it stands and prioritise treatment of this emerging illness. In addition, research needs to be done in order to understand why increasing numbers of Australians are becoming ill, many after tick bites.  

The lack of available treatments for those who have Lyme-like illness in Australia is due to a legacy issue where healthcare policies have refused to recognise the disease given a lack of available evidence indicating that the same infection pathway that exists in the US also exists in Australia. This has left many of those who seek treatment without recourse. A survey conducted by the LDAA among those with Lyme-like symptoms found that many waited an average of 10 years before receiving an accurate diagnosis, leaving them with an advanced and chronic disease scenario. 

Australia is not alone in its fight against Lyme-like illness, with increasing evidence indicating multiple alternative strains of bacteria worldwide, in addition to the well-characterised Borrelia burgdorferi that causes Lyme Disease in the US, could also be causing Lyme-like illness. 

Dr Richard Horowitz, member of the US Congress-established Health and Human Services Tick-Borne Disease Working Group, also believes this is a world-wide epidemic and is causing major disability for millions of people and future generations will also be affected.

In Memorandum: Dr Neil Spector

Sandra Coates Associate Professor of Medicine, an Associate Professor of Cancer Biology and Pharmacology and the Associate Director of Developmental Therapeutics for the Duke Cancer Institute, Duke University

Dr Neil Spector, Lyme patient and advocate, nationally recognised physician-scientist, translational research leader, and oncology mentor, passed away on Sunday, June 14, 2020. He was 63 when complications of Lyme disease took his life.

Dr. Spector’s sudden heart symptoms were initially diagnosed as “stress” by top doctors because he lived in Florida where it was considered impossible to contract Lyme disease. “That’s what we now call “misdiagnosis by geography.” Unfortunately, it’s still a huge problem throughout the country.” wrote Dorothy Kupcha Leland in her obituary. It’s still the most common reason for misdiagnosis in Australia too 😭

We know Dr Spector wanted the medical world to take note of the dire consequences this late diagnosis has for Lyme patients. We’re so sorry that he was unable to contribute to the LDAA Scientific Advisory Committee and to Australia in the way he envisioned, but we know he’ll be a guiding light from above.