Greg Hunt (Flinders, Liberal Party, Shadow Minister for Climate Action, Environment and Heritage) Share this | Hansard source

It is a great honour to support the member for Cook, the member for Shortland and this motion on mitochondrial disease. This debate shows the parliament at its very best, and in my judgement the parliament is at its very best when it focuses on two primary functions. We only have two constitutional functions; they are, firstly, to make laws and, secondly, to represent our electorates. This motion comes from the lived experience of the member for Cook and many others as representatives of families and children who have great challenges. I know from my own experience that two causes with which I have had the honour, and indeed the joy, to be involved are juvenile diabetes, working with the Juvenile Diabetes Research Foundation in particular, and autism, working with Autism Victoria.

Against that background we see the issue of mitochondrial disease. Mitochondrial disease affects up to 100,000 Australians. We know that, worldwide, every 30 minutes is born a child who will develop mitochondrial disease before their 10th birthday. In Australia approximately one in every 250 people is affected by some version of mitochondrial disease, although we believe that much of it is misdiagnosed and has yet to be fully recognised.

Let us understand what it is we are talking about. Mitochondrial disease is a largely incurable genetic disorder that essentially saps the body's cells of their energy. It reduces the ability of the mitochondria to produce the energy required for critical bodily function—it disrupts muscle and organ function and in some cases leads to organ failure or even, tragically, to death. It is a disease of heaviness that limits our ability to be our full selves. I was reminded of John Donne's meditations and his Variations upon Divergent Occasions. I was literally contemplating on the way into the chamber the phrase: 'No man is an island, entire of itself, each is a piece of the continent, a part of the whole. If a clod be washed away by the sea Europe is the less as well as if a promontory of thine own were'. It goes on with the critical phrase: 'each man's death diminishes me, because I am of mankind. Therefore, never seek to know for whom the Bell tolls, it tolls for thee'.

This topic reminds us, as parliamentarians, of our good fortune and our responsibilities. Each day, and this is a largely untold part of the story of the best of the parliament, each member of this parliament encounters in their own electorate people who, for whatever reason, need or cause, desire and are in absolute need of assistance. Mitochondrial disease is one of those hidden problems that we as a society face.

We recognise that there are serious problems in relation to awareness, research and support. In terms of awareness, not many Australians—hitherto including me, I have to confess—have been fully aware of what mitochondrial disease means, in terms of the scope, with nearly 100,000 Australians suffering some form of mitochondrial disease, or the impact. The effects of its progressive impact on organs range from modest through significant, leading to a crushing lack of energy, to preventing them carrying out their most vital functions, at its worst. It affects our vital organs—in many of the worst cases the organs of the youngest of children—which are then unable to do their thing. We need to be more aware. We need champions. I honour and respect the member for Cook, who has raised this as his issue. He is a great friend and I am pleased that mitochondrial disease has a champion in the parliament. I am sure that there will be very strong support. I honour the support of those on the other side who speak today. So we recognise that there is an issue around awareness. Secondly, there is also an issue around research. Significantly, this disease is not just largely unknown but one where the diagnosis remains difficult and the treatment undeveloped. There are things we can do to deal with many of the symptoms, but the causes are one of the frontiers. This century, in my judgement, will be, among other things, the century of communications. It will be an environmental century in terms of the changes we make to the by-products of our modern life. But in particular, of all of the different radical transformations, I think it will be the century of biotechnology. One of those items in desperate need of research and development and cure and treatment is mitochondrial disease. The impact on individual lives is profound.

I want to deal with a particular case study, one which we have been given permission to use: that of Joanne Edwards from Melbourne and her daughter Annaliese. Annaliese is an 18-year-old young lady. She has had a major tremor in her hands, to the point where she cannot cut the food on her dinner plate or eat the food off a spoon. She struggles to put that food onto her fork or to write her name, let alone to pen an essay, whether on the computer or by hand. That same tremor, caused by mitochondrial disease, is also in her speech and her limbs, making it difficult for her to go about the ordinary things which we take for granted in our lives. She has been knocked with falls. She has been taken to hospital by ambulance. There are challenges in her development. And she went undiagnosed for 12 years, despite the fact that her family had taken enormous steps to find out what it was that was challenging their daughter.

Annaliese's particular strain and mutation of mitochondrial disease is not life-threatening in and of itself. It may not be as severe as other mutations. However, it does make her day-to-day life exceptionally tough. And then there are those—and I considered looking at the case studies but chose not to—where the lives of young children were not able to pass through and they have been lost to their families. As a parent, that is every parent's nightmare—not just to lose a child but to lose them through a long, slow, tragically painful process where their child wastes away in front of them. What could possibly be worse? So we have a great human task—a moral responsibility, and I absolutely do not shy away from that—to support the research.

That leads me into the third part of what I wish to talk about, and that is the general notion of support. There are two things that we need to do. One is to deal with the research—to actually embark on a federal program—and this is a difficult time. Our nation's budget is in a very bad place and it appears, day to day, as if things are getting worse. But, that aside, in a budget which will be well over $300 billion I am sure that we can find some money somewhere for vital research which is about saving lives, protecting lives and improving the lives of those who are truly the most vulnerable. If we cannot do that then we have some serious questions as legislators, executors and representatives to ask ourselves.

We also have a duty to raise awareness. How do we support? We raise awareness. The more that we can talk about this issue the more we may take away stigma, in the same way that awareness about juvenile diabetes and autism has helped take away stigma. That is a very important part: many of these children may be stigmatised, because that can be the nature of our school environment. So we have to improve our general schooling environment, but we also have to provide specific information: that this disease of tiredness is an issue, a condition—something which is not within their control. And that is why this Sunday is Stay in Bed Day. I will be sponsoring my good friend, the member for Cook, to stay in bed, and I would encourage all Australians to sponsor him to do so on that day!

More seriously, I thank the member for bringing this motion. I commend its sentiments, and I believe that we have a deep duty to support research and awareness and to take all the steps we can to help those with mitochondrial disease. (Time expired)

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