“It’s a Crime not to Recognize Lyme”
More than a hundred protesters gathered outside the NSW Ministry of Health Office in North Sydney on the 14th September, holding placards, shouting slogans, and dressed in lime green all in an effort to increase awareness of the tick-borne illness. One key demand was for the possibility of acquiring Lyme disease in Australia to be recognized so that patients do not face such significant opposition to diagnosis by doctors and other medical professionals. Current testing for Lyme disease in Australia, along with subsequent management of Lyme disease are inadequate according to the protesters, many of whom have faced more than a decade of misdiagnosis, pain and confusion owing to the relative lack of awareness of the condition.
Confusion Over Lyme Disease in Australia
A number of patients in Australia have found that getting tested through Australian laboratories meant getting a negative result for Borreliosis whereas tests done in the US provided a positive result. This has raised suspicion among some doctors that the tests need to be sensitive to a wider variety of antigens, including European and US strains of Borrelia. There may also be confusion over Lyme disease in Australia due to the different tick species that may be able to transmit the infection. In the US it is largely thought that the blacklegged tick causes most cases of the illness, whereas the paralysis tick, and a number of other local species may be carrying Borrelia in Australia. Unfortunately, without official recognition of the capacity for such a variety of ticks to carry and transmit Lyme disease bacteria it is difficult to acquire funding for research; creating something of a catch 22 for Lyme disease advocates.
One of the organisers of the protest, Danielle Ryan was all too clearly suffering during the action as she shook with tremors and pain attributed to long-standing infection with Borrelia. Many patients described how they lost their health, their jobs, and even moved overseas in order to access proper treatment for their condition, having faced denial by dozens of doctors in Australia. Another key demand was to have Lyme disease become a reportable infection in Australia, allowing health policy advisors and health ministers to properly monitor the number of cases occurring in the country and allocate research funding accordingly.
Progress as NSW Health and Lyme Advocates Talk
After the rally, the organisers of the protest, including Ms Ryan, were invited to a meeting with the chief NSW Health officer Jeremy McAnulty and Kerry Grant. As a result of this initial meeting NSW Health have made a number of commitments to action as detailed below. This information was taken from the handout given to the Lyme disease advocacy group representatives present at the meeting and has caused many Australian Lyme disease sufferers to become enraged at the generalities used by officials. However, the protest’s organisers have noted that this is just the very start of a long process to getting better recognition for Lyme disease in Australian and, subsequently, improved diagnosis and treatment.
*** Lyme Disease Protest Meeting Handout from NSW Health ***
Representatives of NSW Health met with Lyme disease advocacy group representatives at the NSW Health head office on 13th September 2012.
A range of important issues were discussed related to Lyme disease in the areas of research, laboratory diagnosis, surveillance, clinical awareness and training, and treatment. A number of requests were put to NSW Health… actions that NSW Health has committed to undertake.
1. That Health Departments acknowledge the evidence that Lyme disease and co-infections exist in Australia.
Lyme disease has been diagnosed in Australia. There is good evidence that Australian ticks transmit infectious disease, such as Queensland Tick Tyhpus and Flinders Island Spotted Fever, and they can also cause tick paralysis and allergic reactions. Doctors in NSW should keep an open mind about the possibility that ticks may transmit Lyme disease in NSW.
ACTION: 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 Lyme disease.
2. That resources be made available to improve Lyme disease and co-infections testing procedures in Australia to international standards.
Standards for testing laboratories are set by the Commonwealth. Local laboratories should follow internationally validated testing procedures to diagnose patients with Lyme disease. Such tests are currently available through two public laboratories in NSW.
ACTION: NSW Health will request the Public Health Laboratory Network of Australia to review whether resources are sufficient and appropriate for Lyme disease testing in Australia.
3. That resources be made available for research into tick-borne and other vector-borne illnesses in Australia.
NSW Health encourages researchers to submit proposals to the National Health and Medical Research Council (NHMRC) to investigate tick-borne and other vector-borne illnesses in Australia.
ACTION: NSW Health will write to the NHMRC to communicate the concerns raised by Lyme disease advocacy groups in Australia about the need for support for research into tick-borne and other vector-borne illnesses in Australia.
4. That medical professionals receive training in Lyme disease and co-infections diagnosis and treatment protocols to an international standard.
ACTION: NSW Health will write to the Australian Health Practitioner Regulation Agency and the Australian Society of Infectious Diseases to communicate the concerns raised regarding the training of medical professionals in the diagnosis and management of Lyme disease and co-infections and to see their assistance in this matter.
5. That patients suffering from Lyme disease and co-infections receive appropriate, ethical and respectful treatment in Australian public hospitals.
NSW Health’s policy and expectation is that all patients, regardless of their illness, receive appropriate, ethical and respectful treatment in public hospitals. While most patients with Lyme disease do not require hospitalisation, hospital admission is readily available if clinically indicated. The standard antibiotics recommended for the treatment of Lyme disease are also readily available in NSW.
6. That Lyme disease and co-infections be made notifiable to all Australian Government Health Services Departments.
ACTION: NSW Health will write to the Communicable Disease Network of Australia to seek their advice on the issue of surveillance for Lyme disease nad whether there should be national notification of Lyme disease.
7. That Health Departments promote public awareness of the importance of tick-bite prevention in the community.
ACTION: NSW Health will review its current tick prevention community resources and consider options for promoting tick-prevention awareness.
8. That workers acquiring Lyme disease or other tick-borne infections through occupational exposures to ticks may not have access to compensation through new work health and safety laws in NSW.
ACTION: NSW Health will raise these concerns with WorkCover NSW.
NSW Health will arrange a further meeting with Lyme disease advocacy group representative later in the year to review these issues and progress made.
Provided to meeting representatives 14th September 2012.
The protesters have an active Lyme disease in Australia Facebook group where updates will be provided on further action and meetings.