Andrew Leigh (Fraser, Australian Labor Party) Share this | Hansard source

I join the member for Flinders in strongly supporting the member for Cook staying in bed; I think there is bipartisan consensus on that point! More seriously, I commend the member for Cook for bringing this motion before the House. Too often, discussions about health care operate at the very high level—the millions of dollars that are spent, the institutions, the hospitals, the doctors, the researchers—and sometimes there is value in a particular motion that focuses on a single disease, highlights the plight of sufferers and allows us in this place to focus briefly on their stories and what we can do to alleviate their suffering.

I must confess that, of all the diseases that scare me, a fatigue related disease is perhaps my greatest fear. In common with many in this place, I quite enjoy doing too many things, so the description of mitochondrial disease as feeling like you are hitting the wall strikes me very much. That is why Stay in Bed Day, on Sunday, 23 September, is an appropriate way to recognise sufferers of mitochondrial disease.

Mitochondrial disease was discovered fairly recently and research on it is ongoing. There is a great deal we do not know about it, but we do know that its symptoms are various and severe. They can include deafness, eye disorder, dementia, muscle weakness, heart disease and kidney disease, to name but a few. I note in passing that one of the syndromes of mitochondrial disease is called Leigh Syndrome, which reminds me that researchers who ask for their own names to be given to a disease are brave people indeed.

The ongoing research into mitochondrial disease is of a piece with the increasing research on what has come to be known as personalised medicine. It is research which recognises that treatment for certain genetic disorders—mitochondrial disease can be caused by mutations to mitochondrial DNA—may require personalised approaches, treatments that are tailored to an individual's genetic structure. That is bringing health researchers and genetic researchers together—and some of that high-level gene research is taking place at the Australian National University. The John Curtin School of Medical Research is one of the great powerhouses of medical research in Australia, and I believe it is through research bodies such as the Curtin school that we are going to make great breakthroughs on mitochondrial and other diseases.

However, at present, as the Australian Mitochondrial Disease Foundation website notes, 'there is no cure, treatment is limited and diagnosis is difficult, costly and often missed'. That is because the mitochondrial mutations are due to the lack of an error-checking capacity of nuclear DNA. Consequently, mitochondrial disease is potentially tied in with disorders such as Alzheimer's, autism and cardiovascular disease—hence, any breakthroughs on mitochondrial disease may well affect our understanding of many other conditions.

I believe that there are two things that are at the core of dealing with mitochondrial disease. The first is ongoing research, what I think of as the push factors, for getting to a solution for mitochondrial disease, whether that is a vaccine or some other form of treatment. But there has also been increasing interest among economists on improving the pull factors—the attractiveness of finding treatments for diseases for which we do not yet have treatments. The GAVI Alliance, formerly the Global Alliance for Vaccines and Immunisation, is currently experimenting with advance market commitments. Advance market commitments are commitments by countries to purchase certain amounts of vaccines. They have been used with great success with pneumococcal vaccine. They have been discussed for use with potential vaccines for malaria and HIV. As policymakers, we need to bring all of the innovation to dealing with a problem of this kind that scientific and medical researchers bring to thinking about the disease itself. There may be a role for advance market commitments in the future as a way of encouraging researchers to find the prize.

One of the benefits of advance market commitments is that they are available to anyone who comes up with a solution, whether that is an established research team or a group of mavericks who are working in a lesser-known institution or even outside an institution. An advance market commitment rewards ingenuity, and we need as much human ingenuity as can be brought to bear on diseases like mitochondrial disease and other diseases for which vaccines do not exist, such as malaria and HIV. I commend that policy tool to the House as a valuable way of addressing diseases about which we do not yet know enough.

I commend the member for Cook for his hard work on finding a solution to mitochondrial disease and am grateful to him for his continued advocacy on this issue.

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