Scott Morrison (Cook, Liberal Party, Shadow Minister for Immigration and Citizenship) Share this | Hansard source

It is my privilege today to move the following motion in this House in the presence of Sean Murray, the Chief Executive Officer of the Australian Mitochondrial Disease Foundation, who joins us today, along with Julie Adams, in the gallery. I move:

That this House:

(1)   notes that:

(a)   mitochondrial disease:

(i)   is an incurable and debilitating genetic disorder that saps the body's cells of their energy; and

(ii)   reduces the ability of mitochondria to produce energy required for vital bodily functions, disrupting important muscle and organ function and leading in some cases to organ failure or death;

(b)   a child is born every 30 minutes who will develop a mitochondrial disease before their tenth birthday;

(c)   one in every 200 people is affected by mitochondrial disease, but many are misdiagnosed;

(d)   each year 50 children will develop a severe or life-threatening form of mitochondrial disease;

(e)   there:

(i)   is a widespread lack of awareness about this disease, its symptoms or effects; and

(ii)   are few effective treatments for this disease; and

(iii)is currently no cure for this disease;

(f)   clinical trials are underway however, research into this disease requires greater monetary and community support and recognition;

(g)   scientists have linked mitochondrial dysfunction to other major diseases including Alzheimer's disease, Parkinson's disease and diabetes; and

(h)   advances in treatment for mitochondrial dysfunction could also improve treatments for millions of people who suffer these other illnesses;

(2)   recognises that:

(a)   16 to 22 September 2012 is Global Mitochondrial Disease Awareness Week;

(b)   23 September 2012 is Global World Stay in Bed Day to raise awareness and funds for research into mitochondrial disease; and

(c)   the Australian Mitochondrial Disease Foundation has been working since 2009 to support patients and their families, spread information and raise the profile of this disease in the community and medical field; and

(3)   calls on the Government to:

(a)   encourage the public and private sectors to promote greater awareness of mitochondrial disease;

(b)   help raise the profile of mitochondrial disease within the medical profession to overcome the lack of knowledge that contributes to misdiagnosis and improper treatment of this condition; and

(c)   ensure there is appropriate support for patients of mitochondrial disease and their families.

Vivian French wrote a picture book that is a favourite of my two daughters, who are aged three and five, and it is called Polly's Pink Pyjamas. It tells the story of a little girl named Polly who wears her favourite pink pyjamas all day long. She does so by choice because she cannot decide what to wear to a children's birthday party. But for many children and adults who suffer from mitochondrial disease they have no choice about being bedridden. Mito is an incurable and debilitating genetic disorder that saps the body's cells of their energy. Being forced to stay in bed and recharge is a common symptom of the disease, and around the world a child is born every 30 minutes who will develop mitochondrial disease before their 10th birthday.

Every cell in the body contains mitochondria. These are the power plants that generate the energy organs and muscles need to make the body move and work as it should. This disease reduces the mitochondria's ability to produce energy, disrupting organ and muscle function, in some cases leading to organ failure. The heart, brain, lungs and muscles are most affected. The disease is life threatening. Unfortunately, there are few effective treatments and there is currently no cure.

One of the big challenges is raising awareness of this condition. How do you try to treat something that can present with any symptom in any organ at any age? Mito was thought to be quite rare in the 1990s and was believed to affect just one in 20,000 people. New research reveals that one in every 200 Australians is affected. That is, they carry genetic mutations that put them at risk of developing the disease or related conditions in their lifetime. Many are misdiagnosed or asymptomatic. That works out to be about 110,000 Australians—more than would fit into the Sydney Olympic stadium and enough to fill Shark Park in my electorate many times over.

Known in the medical field as the notorious masquerader, mito exists in several hundred different forms with varying effects including strokes, seizures, gastrointestinal problems, kidney and heart difficulties, muscle failure and liver disease. The disease can appear at any age and doctors cannot predict how it will progress. So little is known about mito that patients are sometimes only diagnosed on their deathbed. Many patients see a merry-go-round of specialists, at great cost, unfortunately with little result. In some cases doctors send them to psychiatrists or psychologists, convinced that there is nothing actually physically wrong with them. Greater awareness about mito and proper diagnosis could lead to more effective treatments much sooner, not to mention saving thousands of dollars on consultations and medical expenses and bringing patients some peace of mind that at least they can put a name to their debilitating condition.

The third week in September, where we are now, is Global Mitochondrial Disease Awareness week, when leading foundations in America, Europe, New Zealand and Australia campaign together to raise awareness and support for mito patients. The highlight is World Stay in Bed Day on Sunday, 23 September. This is a poster which talks all about mito Stay in Bed Day, which is on Sunday, 23 September. I seek leave to table that for the benefit of members.

Leave granted.

The idea is to throw a pyjama party or a 'bed in' where you wear your PJs to school or work to show support, as persistent fatigue is one of the first signs of the disease. There are clinical trials and research programs under way, but greater awareness and funds need to be raised so that important scientific work can continue. Researchers have also linked mitochondria with diseases like Alzheimer's, Parkinson's disease and diabetes. They believe that advances in the way we can treat mito disease could help improve treatments for the millions who suffer these other illnesses.

Today's motion recognises in this place the widespread unpredictable nature of this disease, as well as its severity, and seeks to promote a greater understanding of mito and support for patients. Last month, the New South Wales Legislative Assembly agreed to a motion to recognise Global Mitochondrial Disease Awareness Week, while a similar resolution has gone before the US Senate. An early day motion before the House of Commons last year put this disease on the public record in Great Britain. I am pleased today to introduce this motion to recognise the dedication of the Australian Mitochondrial Disease Foundation here at home. The AMDF has worked tirelessly since 2009 to support patients and their families spread information and raise the profile of this cruel and debilitating disease.

Dr Karen Crawley of Gymea in my own electorate of Cook has helped run the foundation for a number of years now, inspired by her 13-year-old daughter Kara's battle with this illness, which I spoke of in this place on a previous occasion. Like many children who suffer from mito, Kara is slowly losing her senses and brain function. It is literally a daily struggle for her devastated family and Karen has been told by doctors that she and her 11-year-old son Braden could also be affected by the illness. Karen's daughter now has developed dementia and forgets to call her 'Mum'. In Karen's words:

With a few years at most to live, our gorgeous girl is disappearing. I am literally watching my daughter slowly die in front of me and there is nothing I can do.

It is dedicated volunteers like Karen who have driven the foundation forward, living today with hope for tomorrow, and the willingness of gutsy patients who are helping make headway into the research. Karen herself is a GP. She runs a 24-hour helpline on her mobile for patients, families and medics with questions about mito. Since 2009, the AMDF have committed more than half a million dollars to research. Before this there were no specific mito studies. The AMDF has funded five PhD research projects and organised support groups in Sydney, Brisbane, Melbourne and Perth. They run information days at research facilities across the country, including the Murdoch Childrens Research Centre in Melbourne, the Kolling Institute of Medical Research at Royal North Shore Hospital and the Children's Hospital at Westmead. The foundation has set up a nationwide patient database and is working to sync it with other global genetic registries. The foundation has funded new medical facilities and equipment like priority access to the next generation DNA sequencing facility at the Royal Perth Hospital, to facilitate faster, cheaper and more accurate diagnosis.

In my electorate each year, the Cook Community Classic raises funds and awareness for more than 30 local community organisations and we have a longstanding affiliation with the Australian Mitochondrial Disease Foundation. Community groups like Caringbah Rotary work hard to support the wonderful work of the AMDF. With encouraging research and burgeoning information and support networks, we are making progress but there is still much to be done in both the field of medicine and the wider community.

This motion today is one step forward toward achieving greater recognition and demonstrating our support for those living with mito. I encourage all Australians to show their support—including those in this House—for the Global Mitochondrial Disease Awareness Week by buying a pin and wearing their PJs with pride on World Stay in Bed Day. Polly did not need an excuse to wear a pink pyjamas, but if you ever needed a reason to sleep in on a Sunday, raising awareness for mitochondrial disease is certainly worth while.

As we sit here and reflect on the many other matters before this House, may we this week spare a thought for those who are suffering under this condition, suffering in the uncertainty that reigns around it but pushing on in the hope that there will be a cure and greater recognition. I commend the motion to the House.

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