Dear Minister

We write to you to enquire on the progress of the 2016 Senate Committee Inquiry on the “Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients”.

Our growing community of Lyme-like disease patients, would appreciate it if you could advise when the Department of Health intends to implement the 12 recommendations made by the committee (see below).

We recognise and appreciate that education and research take time, consequently the faster programs are established and executed, the better for all concerned. However, we feel it is not happening fast enough, as tragically, in the last month we lost yet another very ill patient to suicide.

We note that AHPRA continues to intimidate and target the small remaining group of specialist trained Australian doctors still willing to treat patients presenting with a Lyme-like illness. Placing more Lyme literate doctors on restrictions simply for trying to help patients who are suffering greatly. AHPRA’s persistence in this type of behavior flies in the face of the Inquiry’s findings.



If the precious few doctors left are forced to close their doors for fear of losing their licenses, what choices do patients have left? Treatment for our chronically ill is not available in either the public or private hospital systems and this was made abundantly clear throughout the Inquiry. Removal of our specialised doctors is effectively committing our most severely affected to a life without hope, and for many, a death sentence, and that is reprehensible.



If our government is willing to award the prestigious Order of Australia Medal to doctors for service to medicine in the field of chronic and infectious disease, why does AHPRA continue to hound practitioners who treat thousands of patients presenting with a Lyme-like illness using world's best practice diagnostics and treatments? These specialised doctors are well trained and highly regarded within the tick borne disease community in terms of their success at restoring patients to health. Without access to doctors educated in this field, many more lives will continue to be lost. This situation is ludicrous, unacceptable and unjust.



Despite the disagreement in some sectors around the science and the name of this multi-systemic infectious disease, surely it is the inalienable right of patients to be helped and treated and doctors must be allowed to help them?

We have nowhere to turn, except to expensive overseas clinics, however this is unaffordable for most who have been existing on the disability pension for decades. Patients are left without options, feeling that their pain and suffering will never end, and as we have witnessed all too often, for some, suicide becomes their only solution.



The Inquiry heard over 1400 submissions all with identical themes: medical neglect, treatment denial, and rejection from the health care industry, family, friends, and the community at large.



Adoption of the 12 recommendations would ensure that the existing impasse would be broken and doctors, patients, carers and their families could soon look forward to a better future.

Our community looks forward to your reply on this urgent matter. A public declaration that the Department is committed to implementing the recommendations of the Inquiry would be welcomed by the thousands of Australians affected by this debilitating illness and their families.



Written on behalf of everyone who submitted their stories, and of those who were too ill to do so.

Vector-borne Illness Community Action Network (VICAN)





LIST OF RECOMMENDATIONS



Recommendation 1

2.90 The committee recommends that the Australian Government Department of Health engage with stakeholders following the publication of the National Serology Reference Laboratory review to discuss the findings of the review and any bearing those may have on testing for Lyme disease in Australia.



Recommendation 2

2.91 The committee recommends that the Australian Government increase funding for research into tick-borne pathogens as a matter of urgency. This funding should include:

funding for research on pathogens which may cause infection;

funding for research on whether newly-identified pathogens can cause illness in humans; and

funding for the development of diagnostic tests which can detect infection by any newly-identified pathogens endemic to Australia.



Recommendation 3

3.54 The committee recommends that government medical authorities, in consultation with stakeholders including the Australian Chronic Infectious and Inflammatory Diseases Society (ACIIDS) and the Karl McManus Foundation, establish a clinical trial of treatment guidelines developed by ACIIDS with the aim of determining a safe treatment protocol for patients with tick-borne illness.



Recommendation 4

3.55 The committee recommends that the Australian Government allocate funding for research into medically-appropriate treatment of tick-borne disease, and that medical authorities measure the value of treatment in terms of patient recovery and return to health. The best treatment options must then be developed into clinical treatment guidelines.



Recommendation 5

3.56 The committee recommends that the Australian Government Department of Health facilitate, as a matter of urgency, a summit to develop a cooperative framework which can accommodate patient and medical needs with the objective of establishing a multidisciplinary approach to addressing tick-borne illness across all jurisdictions.



Recommendation 6

3.57 The committee recommends that federal, state and territory health agencies, through the Council of Australian Governments Health Council, develop a consistent, national approach to addressing tick-borne illness.



Recommendation 7

3.58 The committee recommends that the Australian Government Department of Health urgently undertake an epidemiological assessment of the prevalence of suspected tick-borne illness in Australia, the process and findings of which are to be made publicly available.



Recommendation 8

3.59 The committee recommends that the Australian Government Department of Health establish the prevalence and geographical distribution of

overseas-acquired Lyme disease in Australia.



Recommendation 9

3.60 The committee recommends that Australian medical authorities and practitioners addressing suspected tick-borne illness:

consistently adopt a patient-centric approach that focuses on individual patient symptoms, rather than a disease label; and

remove 'chronic Lyme disease', 'Lyme-like illness' and similar 'Lyme' phrases from diagnostic discussions.



Recommendation 10

3.61 The committee recommends that, to help the referral of patients for guided and comprehensive pathology testing, medical practitioners work with pathologists, especially microbiologists, immunologists, chemical pathologists and hematologists to optimize diagnostic testing for each patient.



Recommendation 11

3.62 The committee recommends that the Australian Government Department of Health work closely with the Australian Medical Association and Royal Australian College of General Practitioners to ensure that general practitioners have a better understanding of how to treat patients who present with complex symptoms.



Recommendation 12

3.63 The committee recommends that treatment guidelines developed by Australian medical authorities emphasize the importance of a multidisciplinary, case conference approach to patient care, involving consultation between general practitioners and specialists with expertise in neurology, psychiatry, rheumatology, immunology, infectious diseases and microbiology.