Sue Boyce (Queensland, Liberal Party) Share this | Hansard source

Tomorrow, the 21st, is Global Motor Neurone Disease Day and, as I have done for the past few years, I want to speak on the topic of motor neurone disease tonight. I would like to thank the previous two speakers for wearing the cornflower today, which is the symbol of motor neurone disease. I know that it sends a lot of encouragement to people in the motor neurone disease community—people with the disease and people who care for those with the disease—to know that senators have recognised Global Motor Neurone Disease Day.

This year the Motor Neurone Disease Association of Australia is asking people to sign a charter which sets out what they see as the rights of people with motor neurone disease. The first of the five rights is an early diagnosis and information; the second is access to quality care and treatments; the third is to be treated as individuals and with dignity and respect; the fourth is to maximise their quality of life; and the fifth is that carers of people with motor neurone disease have the right to be valued, respected, listened to and well supported. I think you would agree with me, Mr President, it does not seem to be a very large ask that someone in Australia should have the right diagnosis at the right time and receive the right treatment that maximises their quality of life and that of their carer. It should not be a lot to ask for in Australia in 2013.

This charter, which people are being asked to sign up to, is on the website of the Motor Neurone Disease Australia, which is mndaust.asn.au. I would encourage everyone to sign up to it. It is simply to allow people with motor neurone disease to experience those rights. The charter is being done in association with the International Alliance and the Motor Neurone Disease Association, which includes England, Wales and Northern Ireland. This is so that we can have a truly global and basic starting point for people with motor neurone disease.

I have mentioned in the past that my younger brother died of motor neurone disease, after only 2½ years from the time of the diagnosis. Diagnosis of motor neurone disease remains one of the more difficult areas. It is often diagnosed after tests have proved that other problems are not what have caused it. Motor neurone disease is in fact a group of diseases where the motor neurons, the nerve cells that control the movement of your voluntary muscles, progressively die. These are the muscles that are under conscious control. I ask you here to think about losing the ability to control your muscles and how you would feel about it. It includes the muscles in your arms, legs, back, neck and, eventually, the muscles that are involved with speech, swallowing and breathing. In most cases the senses are not affected, which means that intellect and memory are usually not affected. There are very few cases of cognitive change taking place, so not only is your body shutting down on you, you are grotesquely aware that it is doing so. The causes of the majority of cases of motor neurone disease are still unknown. It is thought that about 10 per cent of cases are caused by a genetic fault—a congenital condition—and that it is inherited.

Researchers around the world are working to try to improve the diagnosis and the treatment, perhaps to delay the progression and even perhaps come up with a cure for this disease. There has been some very, very encouraging progress made in the last few years, but the fact remains that, right now, there are over 1,500 people in Australia with motor neurone disease. Six hundred Australians die every year of motor neurone disease. The majority of people are affected by motor neurone disease in their 50s and 60s, although there are people who are younger. One of those people was a woman named Deb Bailey, who was a Sydney journalist who died at the age of 48 because of motor neurone disease. The Deb Bailey Foundation has been set up and works with the Australian School of Advanced Medicine at Macquarie University. It now has over $10 million for the first motor neurone disease-specific research centre in Australia, with five of Australia's leading researchers, including Professor Ian Blair, who would be considered to be one of Australia's leading researchers. Professor Blair received the inaugural Motor Neurone Disease Australia Leadership Grant in November last. As Professor Blair said recently, we are getting closer to a world free from motor neurone disease. There has been some collaborative work going on, not just through Macquarie and the University of Sydney but also with Stanford University in the US, looking at some of the genetic causes of disease. In the US, motor neurone disease is known as Lou Gehrig's disease. It was named after a famous US baseball player, who was probably the person who did the most to promote the problem of motor neurone disease in the US.

Professor Blair said that in the past few years there have been a lot of breakthroughs in the familial form—the congenital form of motor neurone—but sporadic ALS has really been a hard nut to crack. What has long been suspected is that there are genetic mutations behind the cases of motor neurone disease that are not congenital, and it would seem now that, with the next-generation sequencing of genomes that we now have, better testing for neurone disease will become possible.

This is not a cure that will happen tomorrow, but the genomes of 50 cases of motor neurone disease have now been analysed. It would appear that a number of the genetic mutations which lead to the cause of motor neurone are being discovered. There is a lot more work to do here, but there is I think for the first time in a long time some hope in this area. It is interesting to look back to articles written just in 2010 and 2011 which talk about disappointment and slow progress and so forth and then to look at how the mood now, in 2013, has shifted and lifted because there is some hope that some of the work going on in the area of genetic mutations and gene sequencing will be helpful.

One other thing that I think is really useful is that in recent times Neurological Alliance Australia has been developed. The organisation started in 2010, but I think it is really the NDIS that has brought this group together. The alliance includes organisations representing people living with motor neurone disease, Alzheimer's, multiple sclerosis, Parkinson's, spinal muscular atrophy and muscular dystrophy—all the neurodegenerative diseases that could benefit from the gene sequencing I am discussing. I am lobbying very hard right now for the NDIS to be extended to those over 65 who have a neurodegenerative condition, because they quite rightly believe that their needs within aged care are quite specialised and specific and that they require the sort of expert help that is not available from staff who are trained simply to look after people with age related disabilities. I commend Global Motor Neurone Disease Day to the Senate.

Senate adjourned at 19:43