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

Given that I am retiring as a senator on 30 June, there have been lots of lasts in recent months—and this is the last opportunity I will have to speak on motor neurone disease in this place. Saturday, 21 June was the winter solstice—the shortest day of the year, which, for many, is a symbolic turning point in our culture. Each year, on and around this day, the global community for motor neurone disease comes together to express their hope that there will be a turning point for them in the search for the causes, effective treatments and, ultimately, a cure for motor neurone disease. Motor neurone disease is a rapidly progressive, terminal neurological disease. It is also known as ALS—amyotrophic lateral sclerosis—or Lou Gehrig's disease, as it is more commonly known in the US. There is no known cure and no effective treatment. MND is also a global problem—it does not discriminate on the basis of race, ethnicity or demographics. In Australia, an estimated 1,900 people have MND and thousands more families and carers live daily with the effects of MND. Each day in Australia, two people are diagnosed with the disease, and their average life expectancy from the point of diagnosis is 27 months.

This year, the Motor Neurone Disease Association of Australia is seeking support for what the organisation outlines as the five rights of those with MND and their carers. The first of these five rights is the right to early diagnosis and information; the second is the right to access quality care and treatments; the third is the right to be treated as individuals and with dignity and respect; the fourth is the right of people with MND to maximise their quality of life; and the fifth is the right of carers to be valued, respected, listened to and well supported. People who want to support these goals can sign up on the website of the Motor Neurone Disease Australia—the address is mndaust.asn.au. I encourage everyone to do so.

I have mentioned in past speeches that my younger brother died of motor neurone disease only 2½ years from the time of his diagnosis

In fact, he was not able to attend my first speech in this place because he had motor neurone disease too badly to travel.

Diagnosis of motor neurone disease is often clinically difficult, and sometimes it is necessary to review a person for some time before the diagnosis becomes relatively certain. In my brother's case it was the fact that he was initially tripping a little with his left foot which caused him to seek a diagnosis. A general practitioner may suspect a neurological problem and organise a referral to a neurologist, but several other neurological conditions resemble motor neurone disease, especially in the early stages, and need careful exclusion. The diagnosis can be assisted through a range of tests, including some which eliminate other conditions, but in fact motor neurone disease is generally still diagnosed because other diseases have been excluded, not because there is a good test for motor neurone disease.

MND is in fact a group of diseases where the motor neurones—the nerve cells that control the movement of your voluntary muscles—progressively die. These are the muscles that are under your conscious control. I would ask anyone to think about losing the ability to control your muscles, and how you would feel about that. It gradually involves the muscles in your arms, legs, back, neck and, eventually, the muscles involved with speech, swallowing and breathing. In most cases, the senses are not affected, which means that intellect and memory are usually completely intact. There are very few cases of cognitive change—so not only is your body gradually shutting down, but you are acutely aware that it is doing so. In the meantime, those with the disease usually experience muscle twitching, cramps, emotional changeability, fatigue and weight loss. Eventually, MND results in paralysis. For most diagnosed with the disease, it is a cruel prolonged death sentence.

The causes of motor neurone disease are not known, but research throughout the world is looking for those causes. There are many theories, including exposure to environmental toxins and chemicals, infection by viral agents, immune-mediated damage, premature ageing of motor neurones, and the loss of growth factors required to maintain motor neurone survival and genetic susceptibility. Most cases of MND occur spontaneously. These are said to be sporadic—meaning that they happen in isolated instances without any clearly identifiable cause. However, there is a familial, or hereditary, MND—and that accounts for about 10 per cent of cases—where a congenital condition is inherited.

Motor neurone disease really requires a global response. Throughout the world, various countries—and, I am pleased to say, these include Australia—are researching the cause, the treatments and the cures for MND. Australia has several world-class research hubs, including the Queensland Brain Institute, the Royal Brisbane and Women's Hospital, and the University of Queensland in my own state. In fact, at the weekend, on MND Global Day—21 June—a brand-new Queensland MND Centre was opened in Coorparoo. For the past 20 years, the only support services in Queensland have operated out of a suburban house in Inala, more than 20 kilometres from the CBD and the central hospitals district. For the cause of MND to grow within Queensland, a centrally located, professional property such as the one that opened on Saturday is essential, and it is a tribute to the supporters of MND in Queensland that they have been able to deliver this outcome. This centre, operated by the MND and Me Foundation, is very much for the MND community. It is for engaging and educating the community, for empowering volunteers and hopefully for inspiring researchers.

In fact, my last senatorial engagement—that is, my last formal engagement as a senator—this weekend will be to attend the Ross Maclean Fellowship Caloundra Cup, a race meeting held on Queensland's Sunshine Coast by the Ross Maclean Fellowship that supports and sponsors the Queensland Brain Institute. This is one of the few research places in Australia dedicated to looking at the underlying neurological factors behind motor neurone disease. To date, the only intervention for MND is the antiglutamatergic medication Riluzole, which slows the progression of the disease and is available on the PBS. But the research continues for the cause and a cure. According to the Australian Institute of Health and Welfare, the number of deaths from MND in Australia is actually increasing. In 2011, 790 Australians died from the disease—that is an increase of 200 deaths over the annual rate from 10 years previously.

Australian researchers are at the forefront of research in this area. Their work covers many categories, including genetics, the study of proteins, cell biology, metabolism, immunology, environment, epidemiology and more. Reading the latest newsletter of the Motor Neurone Disease Research Institute of Australia can give us cause for hope. There are so many Australians researching so many different aspects and who are dedicated to finding a cure and to providing comfort for those who live with MND now. And that is what MND Global Day is primarily about. MND Australia is providing all senators with a cornflower to wear on Thursday, as a symbol of hope. I am wearing mine tonight, but I will be wearing it again on Thursday. The blue cornflower is the international flower of hope for motor neurone disease. It symbolises courage. It can withstand both frost and drought, and its strong blue colour never fades, no matter what it faces. Like the cornflower, people with MND show tremendous courage and strength of character to cope with this challenging disease. I would hope that people would wear their cornflower next Thursday as a symbol of their support for Motor Neurone Disease Global Day. There will also be a morning tea held by Motor Neurone Disease Australia here on Thursday, and I would encourage members to attend that.