Guy Barnett (Tasmania, Liberal Party) Share this | Hansard source

I stand tonight to acknowledge Motor Neurone Disease Awareness Week and to pay tribute to the 1,400-odd Australians who have motor neurone disease. Motor neurone disease is a rapidly progressive and fatal disease that can affect any adult at any time. The cause of motor neurone disease is unknown. There is no known cure. Tonight I want to pay tribute to the Australians with motor neurone disease, the families and carers of those people with motor neurone disease and the various motor neurone disease associations in the various states and territories of our great country.

In doing so, I would like to place on the record that my father had motor neurone disease and my family has for many years been involved in various associations, particularly and specifically the Motor Neurone Disease Association of Tasmania, of which I was president for a number of years, and I was also on the national board of the Motor Neurone Disease Association.

As I said, I want to pay tribute to those with this disease and their families and carers. In doing so I would like to outline to the Senate and place on the record some of the attributes of the disease and highlight some of the challenges that the families and carers of people with motor neurone disease and, indeed, the people with motor neurone disease have in Australia and around the world.

The life expectancy for most people with MND is just two to five years. Around half will die within 14 months of diagnosis. The incidence is the number of new cases of MND each year. There is no accurate measure of the incidence of MND in Australia, but there is an estimate that it is one in 40,000 or 2.44 in 100,000. The prevalence is the number of people who are living with MND. The prevalence of MND is approximately one in 15,000 people or seven per 100,000. As I said, there are currently an estimated 1,400 people living in Australia with MND.

In short and in summary, every day in Australia someone dies with motor neurone disease and another person is diagnosed with that same disease. In 2004-05, 507 people died with MND. In 2005-06, 445 newly diagnosed people registered with the MND associations. World figures say that there is an incidence of around two per 100,000 and a prevalence of six per 100,000. That is as at 2005.

MND occurs in all countries, usually in people over the age of 40, and more often in men than in women. But there are cases of younger people being affected. The peak ages of onset are in the 50s and 60s. MND leaves people unable to walk, talk or feed themselves, but the intellect and the senses usually remain unaffected. People with MND can still think and feel, but their muscles refuse to work. The senses, intellect and memory are generally not affected.

Motor neurone disease is the name given to a group of related diseases affecting the motor neurones or nerve cells in the brain and spinal cord. As the motor neurones gradually die, the muscles stop working. Motor neurones are nerve cells that control the movement of voluntary muscles—that is, muscles that are under conscious control. These include all of the muscles of the trunk and limbs and those of speech, swallowing and breathing. So you can understand the challenges facing people with motor neurone disease and the difficulties that lie ahead of them following diagnosis.

MND is a progressive, degenerative disease of the motor system occurring primarily in middle age and causing muscle weakness and wasting. With no nerves to activate them the muscles gradually weaken and waste, and paralysis ensues. Weakness is often seen first in the hands or the feet. The first sign may be difficulty with swallowing or slurred speech. Muscle twitching and/or cramps may also occur.

There are three clinically distinct forms. The first is amyotrophic lateral sclerosis or ALS, as it is referred to in the United States. In the US it is also referred to as Lou Gehrig’s disease—Lou Gehrig was a famous baseball player. The second is progressive muscular atrophy and the third is progressive bulbar palsy. Some forms of MND are familial—that means they are inherited. In fact, in about 10 per cent of cases of people with MND that is the case. There is also a sporadic version and that is more common. That is the cause in 90 per cent of the cases of people with MND.

MND affects each person differently in respect of initial symptoms, rate, pattern of progression and survival time. There are no remissions. As I have indicated, the average survival time after diagnosis is two to three years or less, with a few people surviving five years or more. There is only one drug available currently in Australia and around the world. It is called Riluzole, sometimes called Rilutek. That drug has some measurable effect on MND, but its benefits are limited. It is the first effective treatment for people with MND and it can be prescribed by a neurologist or GP. It may extend a person’s survival time by an average of nine to 12 months and, indeed, slow the progression of the disease.

Progression of MND can be rapid, creating high levels of disability and consequent needs for support. The support needed includes assistance with feeding, communication, movement, transferring, toileting and daily activities along those lines. It certainly has a comprehensive impact on one’s life. A key feature of the disease is the speed of progression, which creates huge adjustment problems not only for the people with the disease but also for their families and carers. It causes a loss of independence, employment relationships, communication, social life and future plans. Only last week SBS ran a very interesting and moving story about a person with MND and his family and their fight and challenge to cope with the disease.

Unlike for cancer, heart disease and AIDS, there is little advice health promotions can give to reduce a person’s chances of being struck down by MND. It can strike anyone at any time. It is for this reason that groundbreaking research is being conducted around the world, particularly on some forms of stem cell treatment, and this has been heralded as the best chance of a cure.

MND was first described in 1869 by French neurologist Jean-Martin Charcot. Interestingly, the first motor neurone disease awareness campaign was launched on 23 March 1999, by the Hon. Dr Michael Wooldridge, the then Minister for Health and Aged Care, as part of Motor Neurone Disease Awareness Week. Dr Wooldridge said that the new awareness campaign would help the community better understand how motor neurone disease affects those who have it and their families and carers.

In May last year Tony Abbott, the Minister for Health and Ageing, announced that the Australian government would provide $22 million over four years towards establishing a national adult stem cell research centre. He said that the funding would be dedicated to innovative research, particularly into Parkinson’s disease, schizophrenia and motor neurone disease.

I want to tonight pay tribute to the motor neurone disease associations around Australia, especially to Helen Sjardin-Howard, the national president, and to Carol Birks, the national executive director of the MND Association of Australia. I want to also pay tribute to Mavis Gallienne, a current board member and former president whom I worked with many years ago, and a tribute to Kevin Langdon, former president and currently patron of MND New South Wales.

The global awareness day is coming up on 21 June, and the national MND conference is being held in Perth on 19 June. I want to pay tribute to Bill Braithwaite and Tim Hynes, who are the current president and former president of the association in Tasmania. I want to pay tribute to my mother, Lady Sally Ferrall, who is patron of the association in Tasmania and demonstrated great courage and determination during a very difficult time when my dad had motor neurone disease over a three-year-period.

I pay tribute to Rod Harris, the chairman of the international ALS/MND association. It is a great credit that an Australian leads such an association. He is currently the executive director of MNDA in Victoria. I also pay tribute to Karen Brookes in Launceston, who has MND and is travelling to China soon for stem cell support. Finally, I pay tribute to my wife, Kate, who is a member of the state executive of the association in Tasmania. She is a speech pathologist and does so much work for the association and for people in Tasmania.

I should also mention Dr Paul Brock, who appeared here in Parliament House just last year on 21 June, International Motor Neurone Disease Awareness Day, and gave a tremendous address on the difficulties of living with motor neurone disease. I pay tribute to all those Australians with the disease and to the associations and their members, who support people with the disease, their families and their carers.