Additional Comments—Senator John Madigan and Senator Zhenya Wang

Additional Comments—Senator John Madigan and Senator Zhenya Wang

1.1        The Department of Health must initiate an Australia-wide health sector education program to communicate to doctors, nurses, hospital staff and other health professionals the ongoing discrimination and vilification of those suffering symptoms of Lyme disease; that such responses by health professionals are unethical, unprofessional and counter to the credo of 'do no harm'.

1.2        The Department of Health must initiate a program of independent, properly funded prioritised research to look into the incidence of Lyme disease and Lyme-like illness in Australia.

1.3        The Department of Health must initiate an immediate public health education response to alert all Australians about the dangers of ticks, symptoms of Lyme disease and Lyme-like illness, and appropriate responses in the way it has done for other infections, such as Zika virus. There must be an immediate public awareness program for health professionals and the public about correct tick removal. We take this opportunity to refer to media reports of four major advertising campaigns under the Abbott and Turnbull governments to at least $84.5 million. Public advocacy expenditure is not an unusual request in this case. We refer to testimony given to the committee by Professor Peter Collignon who said:

We should avoid people being bitten by ticks ... I think we need a tick education program.[1]

1.4        The chief medical officer of every state and territory plus that of the Commonwealth must come together as a matter of urgency – along with patient representatives – to show leadership and devise a co-ordinated response.

1.5        Rules governing Medicare must be expanded to enable pathologists to undertake a suite of testing to respond appropriate to tic-borne illnesses.

1.6        We take this opportunity to highlight Dr Richard Schloeffel's evidence to the committee comparing the status of Lyme disease in Australia today with the onset of HIV. Dr Schloeffel is medical director of Pymble Grove Health Centre. He is also an adviser to the tick-borne diseases unit at Sydney University and he has been treating Lyme-like illness for 20 years. Additionally Dr Schloeffel is chairperson, Australian Chronic Infectious and Inflammatory Disease Society.

1.7        Dr Schloeffel stated:

In 1983 I was a GP in Bellingen; I was only very young. I had a few patients and they were gay men who were going to the bathhouses in San Francisco. They developed illnesses that I had never heard of before—strange pneumonia, strange gut infections—and they became immunosuppressed and they died.

So I took an interest in this. Then by the late 80s we were starting see a lot of these people, generally gay men, and we had the bowling ball and the Grim Reaper. We found a virus that caused an infection that lowered the immune response, and when the immune response was low enough people got opportunistic infections.

We had a whole army of scientists working this out, finding the virus and developing medications to prevent the virus from replicating, so we actually stopped the epidemic. There was an intellectual process, but it did not happen until children and women who got blood transfusions, and kids who had haemophilia from the blood, started to get sick and die. They went, 'Oh my God! We have to do something'.

Before it was only gay men, so it did not matter. There was the same sort of thought process among the medical profession, that some people are better than others and there was no emergency. Then it became very urgent and it was extremely urgent. I buried probably 100 of my male patients who had this disease before we had a treatment. Now, I was a GP treating their co-infections trying to work out how to help their immunity.

I was an integrated doctor, even then. Then I went to Byron Bay and worked up there. They were all coming up there to die and I did palliative care. I saw all this, and it was all too late for them. There were a lot of patients that we were able to treat in the early 90s who went on to AZT and the associated medication. They are still alive and still well, just on medication to suppress the virus. Now that is one germ, one entity.

The thing is that this illness is a multisystem infection with multiple organisms. Where people get it from is vague. It is sexually transmitted, it comes from blood transfusions, its congenital and it comes from vectors. The array of symptoms is enormous, which makes it different to AIDS, but the problem is the same. If you deny the illness is there but you have all these people sick, then what is wrong with them? If you say to them, 'Yes, you are sick. There's nothing you can do,' or, 'You're just putting it on,' that is not real medicine. That is denialism.[2]

1.8        Dr Schloeffel also spoke about the arrogance and miasma of much of Australia’s medical orthodoxy on this issue.

1.9        He told the committee:

I cannot talk for other doctors and their thought processes, but I would like to say to every doctor in Australia, 'Wake up to yourselves. Start listening that we've got a real illness. Let's have a proper conversation. Let's do the proper science. Let's fund it.' We have tens of thousands of people with Lyme-like illness and co-infections, some of whom are dying, and they do not get a cent. Where is the research money for these infections? We have to put money into it, we have to have a proper conversation and the denialism has to stop, because that is actually malpractice. It is actually negligence on the part of the medical profession.[3]

1.10      The time for a co-ordinated response by our health authorities is now. The lives of thousands of Australians are at stake.

Senator John Madigan                                                      Senator Zhenya Wang

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