Rachel Siewert (WA, Australian Greens) Share this | Hansard source

Exactly. This committee inquiry, if people remember, was basically into the issues around the number of people who have a Lyme-like illness. We made 12 recommendations and we received hundreds of submissions and a lot of evidence from people that were affected by Lyme-like illness. One of the great issues for those affected by Lyme-like illness was that people didn't believe they were ill. We had a lot of evidence around doctors not believing them and about being rejected. In fact, the president of the AMA made a very unfortunate statement as we started our committee inquiry.

Importantly, out of the inquiry, people felt heard and they supported our recommendations. Government have now come a significant way in addressing this issue and I do welcome their response. It probably doesn't go as far as some people would like, but I think there has been some significant progress. The introduction in the government's response states:

… the Government has gained a deeper appreciation and real concern for those Australians experiencing these chronic debilitating symptoms …

It goes on to state:

The Government remains engaged with patient and medical community to continue to find, share and understand the evidence associated with this medical conundrum.

It's actually really significant that they are now saying they will look much more seriously at this issue.

I know some people have been frustrated, because I've been getting phone calls and emails about the government taking a little while to respond to the committee's inquiry. I know that the government have been engaging with our recommendations for some time, and I note my appreciation for the updates on their progress. The fact that the government are now making some progress here makes up for the government's delay that some people see.

It's important that the government now recognise and acknowledge that people are ill and are sick. That is such a significant step in the right direction. From my reading of the government's response, while they believe people are ill, they're don't necessarily think the evidence is there around whether it's caused by ticks, whether it's tick-borne. The evidence the committee received does show that there could be potential for other vectors. A lot of the government's response is termed around, 'There may not be evidence around tick-borne but we have to find out what it is'—that's how to summarise it in a couple of quick sentences.

The government also state:

The Australian Government through the Department of Health remains open-minded about the cause of the various complexes which manifest as constellations of chronic debilitating symptoms. The best outcome for patients is to not draw conclusions based on poor levels of evidence, but to consider each patient thoroughly in a multidisciplinary medical approach that makes the best use of clinical acumen and available diagnostic skills and technology.

I think, again, we are making some progress.

In response to the committee's recommendation 2, where we recommended that the government increase funding for research, the government made quite a lot of comment:

The Australian Government, through the Department of Health recognises the need to direct funding to determine the cause or causes of the symptoms affecting these patients through research that is comprehensive, evidence-based and incorporates a multidisciplinary assessment.

That is one of the things that came out of our report very strongly—that we need to be taking a multidisciplinary approach. The government goes on to articulate that the NHMRC has started a process called a 'targeted call for research', or TCR, and the minister has announced that the NHMRC will hold a TCR on this topic in 2017-18. It goes on to say that $3 million has been allocated for research in the TCR process. They think that there will be a significant response to the concerns of patients who are seeking answers to their medical conditions.

We also made some comment in our report around the terminology. We recommended that we don't call it 'Lyme-like' anymore or use any of the words that are basically associated with the Lyme-like illness, because it doesn't adequately describe what's going on. They didn't quite agree with the terminology we suggested—fine—but they are taking the approach of calling it 'debilitating symptom complexes attributed to ticks'. In other words, we're going to start looking at these. At the moment, people think it's caused by ticks because classic Lyme disease found in America and European countries is caused by ticks. We just haven't been able to quite prove that yet here. Although there's a strong belief it is, we haven't been able to prove it, but we know people are sick. We know that there are debilitating symptoms and that this issue needs to be addressed. I'm really pleased to see that the research is going ahead.

The government also agreed, as I said, to the funding. They said:

The Australian Government ... recognises the need to direct funding to determine the cause or causes of the symptoms affecting these patients through research that is comprehensive, evidence-based ...

I take it from their recommendations that they also realise that other vectors could be involved. They then go on to talk about our recommendations. Our recommendation 6 says:

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.

The government said:

... the Department of Health would support consideration of a national approach via the Council of Australian Governments' Health Council ... and the Australian Health Ministers' Advisory Council ... to the comprehensive multidisciplinary management of these debilitating symptom complexes. The Government, however, emphasises the need for an open mind on causality ...

In other words, they again move away from whether it's tick-borne to look at what other causes may be involved.

The government have published already, in response to our recommendation, recommendations around the prevalence and geographical distribution of overseas-acquired Lyme disease, because there are cases of classic Lyme disease in Australia that were acquired overseas. They say:

... the Australian Government, through the Department of Health, has published a guideline on overseas-acquired Lyme disease, which is publicly available.

The government also support our recommendations around assistance to patients and, in particular, the need for a comprehensive approach and a multidisciplinary approach.

As I said, we have waited a little while. I'm sure some people think the government should have gone further, but I think this is a comprehensive response. I congratulate the government and say thank you to the government for responding in a meaningful way. Let's keep the momentum on this issue. It needs to be addressed. I beg the government to please keep going on this issue. Help the people who are suffering from these debilitating symptoms.