Monique Ryan (Kooyong, Independent) Share this | Hansard source

I rise to speak to the National Occupational Respiratory Disease Registry Bill 2023. This bill will create a legislative framework for the establishment and ongoing management of the National Occupational Respiratory Disease Registry. It is planned that this registry will capture and share data on the incidence of respiratory diseases thought to be occupationally caused or exacerbated, their causative agents, and exposures to those causative agents. The national registry will also capture respiratory health data to aid in the detection of new and emerging threats to workers' respiratory health, to inform incidence trends, and to help with targeting and monitoring of the effectiveness of interventions and prevention strategies.

Specifically, this registry will require respiratory and occupational physicians to notify diagnoses of occupationally caused silicosis. It will also allow for the voluntary notification of other occupational respiratory diseases. It is anticipated that the voluntary notification of those other diseases, which are thought to be occupationally caused or exacerbated, will help with the identification of new and emerging occupational risks to workers' respiratory health. While silicosis will initially be the only disease for which notification will be mandatory, the bill does provide for other occupationally caused or exacerbated respiratory diseases to be prescribed, subsequent to further development by the minister and the chief health officers of the states and territories.

This registry has been established to support the National Dust Disease Taskforce in developing a national approach to the prevention, early identification, control and management of occupational dust diseases in Australia. It will help us identify disorders, occupations, job tasks and workplaces in which there may be risk of exposure to respiratory disease-causing agents. It will provide the first ever national overview of the prevalence and types of occupational respiratory diseases in Australia. That's great data to have. The register will enable preventative action to be taken to reduce further worker exposure and to assist with the identification of suitable individuals for participation in clinical trials and observational studies. It will facilitate research on the causes, incidence, prevalence, nature, extent and trends specifically of occupational respiratory diseases.

This bill comes in response to the significant number of stonemasons who have been exposed to the tiny particles of crystalline silica dust, which is released every time they cut, grip and shape engineered stone, like Caesarstone, into kitchen benchtops and bathroom vanities for the homes of Australia. One study into silicosis by Curtin University, commissioned by the ACTU, estimated that as many as 275,000 Australian workers had been exposed to high levels of crystalline silica. Disturbingly, that union estimates that as many as one in four stonemasons working with engineered stone have developed silicosis.

Mr Speaker, this bill adds to the web of disease registries that aim to identify the incidence and prevalence of medical conditions in Australia, and which track the epidemiological traits, follow their management, assess responses to treatment and identify patients for clinical trials. By improving the quality of our healthcare data, the existence of patient registries like this one should improve the government's ability to allocate our finite and precious healthcare dollars to the best effect.

There is a bigger issue, though, with this piece of legislation. It deals with a single respiratory disorder. There is no doubt that this condition, silicosis, is a tragic one. It is entirely worthy of scrutiny. And we should, as a country, do everything we can to protect workers in their workplaces, limit the risk and improve the treatment of all occupational diseases. This registry is really important, given the significant prevalence of this severe industrial disease and its devastating impact on those people affected by it.

But there are many life-threatening medical conditions. Just this morning, I met with Breast Cancer Network Australia to hear their call for improvements to the collection and reporting of metastatic breast cancer in this country. It's a worthy cause and one which is worthy of support. I have just come from a meeting with representatives of the diffuse intrinsic pontine glioma community. They're in the House as we speak. DIPG is a relatively rare disorder of early childhood, but 25 Australian children die every year from the complications of DIPG. We don't have a national registry for DIPG. Australian children are enrolled in the American registry, and our oncologists, our cancer specialists in this country, keep track of patients themselves. But DIPG has not been subjected to or received the same amount of attention or support as silicosis. It's not a lottery, nor is it fair.

Next week I will meet in this House with representatives of the Children's Tumour Foundation of Australia, who represent patients and families affected by another rare disease, neurofibromatosis. One in 3,000 people are affected. It's rare but often severe and also worthy of research and support. Separately, next week in this House, my colleague the member for Macarthur and I will meet with representatives from Spinal Muscular Atrophy Australia. This is another severe, devastating disease associated with high mortality, and, again, it is worthy of support. We will also meet with community representatives affected by Duchenne muscular dystrophy, another rare disease. One in 5,000 boys is affected. It's devastating and severe. All of those representatives from these various communities are advocating for better quality data collection to facilitate improved care and research into these diseases.

In my previous professional life, when I was director of the neurology department of the Royal Children's Hospital in Melbourne and head of the Australasian Neuromuscular Network, I established the Australian Neuromuscular Disease Registry. Neuromuscular diseases affect one in 1,000 people in Australia. They are relatively common cumulatively. They are severe and often life-threatening. My colleagues and I established that registry to better understand the history of those disorders and how to monitor and treat them, improve our service provision, identify subjects for clinical trials and bring those clinical trials to Australia. That registry, which is now up and running—it's been going for three years now—represents a platform for patients, clinicians, researchers and industry to work together to develop new therapies and to advance scientific knowledge of those rare diseases. Was it funded by the government? No. It was funded by pharma and by donations from patient groups and support groups. It had no government funding at inception and it has had no government funding since.

Australia has a comparative advantage in our potential for data collection, which puts us in an exceptional position to set up registries like that which is under discussion today and like the registry that I established in 2020. They can be established as an extension to our world-class universal healthcare system, Medicare. We should be able to collect the data that we'll collect as a result of the bill we are debating today much more efficiently, effectively and cheaply. It is wasteful and inefficient to be reinventing the wheel for every one of the thousands of serious diseases that our medical professionals see and manage. Healthcare data collection in this country has been problematic for a long time. It's piecemeal and it's patchy. The government must look to improving the quality of our data collection on this and other rare diseases. It should look to making the best of the Medicare system and the data that it collects. We're not doing that in a way which is intelligent, which is forward thinking and which is going to optimise healthcare provision in this country.

So although I'm very happy to support this bill, and I support the government's efforts in increasing and improving support for patients affected by occupational respiratory diseases, I also ask this government to show the vision that it needs to show to approach data collection within the Medicare system in a more holistic fashion, to look at better collating and assessing the manifold data that our medical professionals collect, to put together the many hundreds of individual disease registries that medical professionals in this country have already established, and to give us a vision for how health care and medical research—and the nexus between the two of those—can be improved in the future. I commend this bill to the House.

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