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

I rise tonight to talk on the topic of Motor Neurone Disease Global Day, which is being held on 21 June, as it has been for every year since 1997. The day of 21 June or 22 June was chosen because it is the solstice, a turning point. The community wanted to use this day as another turning point in the ongoing search for the cause of, the treatment of and the cure for this awful disease. Motor neurone disease is a disgusting disease. Outside this parliament I have been known to use much stronger language about motor neurone disease. Senators would remember that former Senator Guy Barnett would speak each year because he was commemorating the fact that his father died of motor neurone disease. About four years ago my younger brother died of motor neurone disease at the age of 53.

MND is the name given to a group of diseases in which the nerve cells that control the voluntary movement of muscles progressively die. These include all the muscles of the arms, legs, back and neck and the muscles that control speech, swallowing and breathing. It is that inability to swallow and breathe which tends to be the reason in the end that people with MND die. MND is also known as amyotrophic lateral sclerosis, ALS. In the US, it is known as Lou Gehrig's disease.

With no nerves to activate them, muscles gradually weaken and waste and paralysis ensues. Weakness is often first seen in the hands or feet or the first sign might indeed be swallowing difficulty or slurred speech. Muscle twitching and cramps may also occur. My brother first noticed that he seemed to be stubbing his left toe quite a bit. From what seemed to be a trivial thing to be seeking medical advice on, it took more than three months before he was diagnosed with motor neurone disease. There is no real diagnosis for it except for diagnosing what it is not. It can mirror many other diseases, such as multiple sclerosis, in its earlier symptoms.

In most cases the senses, the intellect and the memory are not affected by motor neurone disease, which is a wonderful blessing. But it can also be a complete curse, too, for the people who see day after day the gradual and progressive decline of their bodies and their ongoing inability to do any activity, including, in the end, swallowing.

MND affects everybody at a different rate. The initial symptoms, the pattern of progression and the survival time can be quite different from person to person. There have been no known remissions of MND. The average survival time from diagnosis is two to three years but some people survive five or more years. The author and scientist Stephen Hawking, who has survived for more than 20 years now with a form of motor neurone disease, is an outstanding example of this. There are members of Motor Neurone Disease Australia who have had the illness for more than 10 years and who continue to be partly mobile and able to speak.

Progression of MND is rapid, creating high levels of disability and consequent high support needs. People with MND will need assistance with feeding, communication, movement, transferring, toileting and breathing. It has an impact on all activities of living. One thing that MND Australia is currently looking at is the fact that the National Disability Insurance Scheme only applies to people under 65. MND can strike at any time in a person's life. It is quite common for it to strike people over 65 and they have a far greater need for services than a normal person receiving the age pension. This is something that we are looking at at the moment.

The key feature of the disease is the speed at which it can progress. One ongoing issue is the Medical Aids Subsidy Scheme, which will provide wheelchairs and the like for people with motor neurone disease, but it can take up to three months to provide a wheelchair. By the time that wheelchair is provided, the needs of the person with motor neurone disease may have changed so much that that wheelchair may no longer be of any use. They might have been able to push a wheelchair with their hands three months earlier but they cannot by the time they get the wheelchair. Their need for a very rapid response is not something that our current assistance schemes are set up to meet.

MND is not contagious. The causes are not known, although it is known that between five to 10 per cent of cases are familial. Because of research that has been done in Australia, the genetic fault in about 60 of these cases in Australia is now known to those families—in other words, out of that five to 10 per cent, the genetic issue in 60 per cent of them is known.

Research taking place around the world—including some very worthwhile research being done in my own state and yours, Mr President, at the Queensland Brain Institute, which is attached to the University of Queensland—is looking at genetic factors; toxic factors; the chemicals that control nerve cells and allow them to communicate; the potential for stem cell therapy; the growth, repair and ageing of motor neurons; and also the better provision of care for people with this rapidly progressing and disabling condition. On Thursday I will be distributing pale blue cornflowers as a way of commemorating Motor Neurone Disease Global Day. The cornflower has been chosen because, so MND Australia tells us, although it has a fragile appearance, it has a very hardy nature. Like the cornflower, people living with MND show remarkable strength in coping with what is a devastating disease. That symbol has now been used since 1997.

I should point out that MND does occur in every country in the world. It is not necessarily a disease of ageing—it can affect people at any age—but the peak onset period is in the 50s and 60s. In fact my brother was just over 50 when he was diagnosed and 53 when he died. It affects men slightly more than women, but in many circumstances that 50-60 age group is when people are raising children or helping their older teenage children. It can have a devastating effect on families. A drug called Riluzole, developed by Sanofi, is the only treatment that has been demonstrated to assist in extending life expectancy. It is registered in Australia now and, because of the work of MND Australia, it is now included on the PBS.

MND Global Day will be celebrated throughout Australia, and here in Canberra on Sunday, 24 June. Anyone who is in town can join the walk 'to d'feet MND', which will leave from the city centre. You can have a look on the MND Australia website for activities in other states.