ADJOURNMENT;Haemochromatosis – 14 Aug 2012

I rise to speak to the Senate tonight about iron. Much is said about the mining of iron ore in Australia. Iron and steel play an enormous part in our lives every day. And we know that there is iron in every single cell in our bodies. We know that there is iron in our food, and we know that fresh meat is a good, healthy source of iron. But some people in Australia are pumping too much iron.

David Blackmore is a fifth generation farmer. He has been a pioneer of the production of 100 per cent full blood wagyu beef in Australia for more than 20 years. He produces premium beef that is sought after in Japan and North America as well as by Australia’s most celebrated restaurants. Some years ago David was flying the world, making many overseas trips to sell his product. He knew about jetlag. But he did not understand why he began to feel tired all the time. He was suffering chronic fatigue and his body ached in nearly all his joints. He came to discover that he had haemochromatosis.

I have spoken about haemochromatosis once before in this place but, just to reiterate, I want to explain to people what haemochromatosis is. Haemochromatosis is also known as inherited iron overload disorder and is the most common hereditary condition in Australia. One in every 200 Australians of European origin has the genetic predisposition for haemochromatosis. Most people know that if you have too little iron in your body, the condition known as anaemia, then you can feel weak and lethargic. But it is much less well known that too much iron often causes the same initial symptoms. People with haemochromatosis absorb too much iron from their food. The overload builds up gradually and silently over the first four or five decades of life. Iron is deposited in the liver, the heart muscle, the pancreas and various other organs. In the early years of adulthood the extra iron may give extra strength and more fight and endurance. That may be why this Viking mutation survived and prospered. It gave added strength for pillage and whatever else they may have got up to. But as the overload increases it becomes toxic.

For those with haemochromatosis, the first symptoms are often fatigue and joint pain. For David Blackmore, these were the symptoms that alerted him that there was something wrong. Fortunately his diagnosis came before too much permanent damage was done to his body. At higher levels the symptoms include arthritis, diabetes, liver cirrhosis and cardiac arrhythmia, and there is a much-increased risk of liver cancer. The incidence of breast and bowel cancer is doubled and the need for joint replacement is greatly increased. Having spent a lifetime studying bloodlines, David quickly understood the hereditary nature of the condition and made sure that all his family were tested.

The good news is that haemochromatosis is not only easy to diagnose but also very easy to treat. The uncontested and universally accepted treatment is venesection, or giving blood, just like donating blood to the blood bank. When blood is removed the body replaces it and, in doing so, draws iron out of its stores. By giving blood regularly, iron overload is reduced. David gave blood once a week for 18 months to get his iron levels back to normal. There is even more good news: the blood given by people with haemochromatosis is usually acceptable to the Australian Red Cross Blood Service.

The bad news is that this condition is seriously under-diagnosed. It is not well known in the general community and is often overlooked in medical services. If this widespread condition were treated by a sophisticated and expensive pharmaceutical product, its existence would have been promoted widely. With a potential market of over 100,000 Australians at genetic risk, the profit motive would ensure that as many people as possible were diagnosed and treated as early as possible—and early diagnosis is essential. If diagnosed early, this condition is entirely treatable and it is no impediment to a healthy and successful life.

There is, as yet, no formal assessment of the cost of haemochromatosis to this nation through work time lost or of the amount of medical treatment required as a result of the poor rate of diagnosis and treatment of this condition. There are numerous reports of chronic fatigue leading to time away from the workplace and early retirement. Patients often give a history of years of distressing symptoms, greatly affecting quality of life, before a diagnosis is made. Unfortunately, late diagnosis can be fatal. Liver cancer can sometimes be alleviated by liver transplants , but both the costs and the risks are high.

In the absence of a profit driven response it has been left to a non-profit group to raise awareness and to provide support to people affected. Haemochromatosis Australia is an entirely voluntary organisation that has been supporting people with the condition for over 22 years. This year, for the first time, it is staging a Haemochromatosis Awareness Week from 13 to 19 August. Recently I sent information to all senators and members promoting this event on behalf of Haemochromatosis Australia. Funded by the subscriptions and donations of its 1,500 members, this organisation has arranged public meetings, displays and exhibitions in all state capitals and several regional centres. It has organised a poster and media campaign.

Last Friday night I had the pleasure of officially opening the Overload exhibition that is currently being held in Tasmania, in one of the northern suburbs of Hobart, at Cooleys Hotel. The exhibition includes artwork by Andrew Christian, Georgina Richmond, Pat Avent, Helen Jessup, Diana Gifford, Caroline Amos, Belinda Casey, Sarah Weaver and Simone Zell. The artists have kindly agreed to donate 20 per cent of any sales from the exhibition to Haemochromatosis Australia so that the organisation can continue its important work. I would like to take this opportunity to congratulate all the artists and everyone else involved for putting together such a fantastic exhibition. I would especially like to mention Sarah Weaver. Sarah had an idea some years ago about doing an art exhibition for Haemochromatosis Australia, and she pulled it together this year. As I said, it was held at Cooleys Hotel, and I would also like to thank Cooleys Hotel for donating the space for the exhibition.

The message for Haemochromatosis Awareness Week is: ‘Are you feeling tired and flat with aching joints over a long time? You may have haemochromatosis, inherited iron overload disorder. It’s much more common than you think. Talk to your GP about your symptoms and haemochromatosis.’ In addition, this group has published and distributed, at its own expense but with the help of its very eminent medical advisers, an excellent booklet, Haemochromatosis: Your Questions Answered.

In conclusion tonight, I would like to state quite clearly that haemochromatosis is a condition whose time has come. We know that it does a great deal of unnecessary harm and imposes a significant cost on the nation. The name, as the posters and pamphlets state, may be difficult to say but it is very easy to find and very simple to treat. I would encourage everybody both in this chamber and in the other chamber to read more about haemochromatosis. You can visit the Haemochromatosis Australia website,, or call their information line on 1300019028. As I said, this organisation has been voluntarily run for 22 years. A fairly well-known Tasmanian, Mr Ben Marris, is the national president of Haemochromatosis Australia. At the time that I was opening the art display last Friday night, Ben was in Parramatta, officially launching the official national Haemochromatosis Awareness Week. It is a great cause for people to be getting behind, supporting and helping to raise awareness of. I know that at least one person in this chamber suffers from haemochromatosis, because they have spoken to me about it. For anyone else that is suffering any of those debilitating symptoms, raising awareness and helping people know what the cause might be can help save a life.