Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

Haemochromatosis Awareness Week was held last week, between 13 and 19 August, to raise awareness of a common but little-known disorder. Haemochromatosis is a disorder that many people may not be familiar with, yet it is one of the most common inherited genetic disorders in Australia. One in 200 Australians with European ancestry is affected by it; in fact, my son-in-law is a carrier but does not have the disease.

Haemochromatosis is a build-up of iron leading to iron overload in the body. Our bodies normally absorb only the amount of iron that they need from our food each day. People with haemochromatosis absorb too much iron. Their bodies store excess iron, in time leading to an iron overload. The condition is seriously underdiagnosed. Many people suffer symptoms of the disorder without realising the underlying cause. The most common symptoms people experience include chronic fatigue, weakness, lethargy, weight loss and joint pain leading to arthritis. These are all chronic diseases that come from haemochromatosis, along with liver cirrhosis and liver cancer, diabetes, heart muscle weakness and serious tissue damage—all preventable if haemochromatosis is diagnosed early enough.

Not everyone will experience these symptoms. Each person has their own individual level at which they might start to feel some of the symptoms of iron overload. Some people will have no symptoms at all; however, serious organ and tissue damage is still being done in the absence of symptoms. This is why early diagnosis is so important. Haemochromatosis is diagnosed by a simple blood test which can be easily done at your next check-up with your GP. Your doctor can order blood tests to check your iron levels. If there is a reason to believe you might have haemochromatosis your doctor can test you via another simple blood test for the gene mutation which causes the disorder.

The good news is that haemochromatosis is easily treated once diagnosed. If detected before damage is caused, treatment can ensure that people live healthy, successful and long lives. The uncontroversial and simple treatment for haemochromatosis is giving blood to unload the iron from your body, known as venesection. As well as unloading the iron from your body you are doing a social good by donating your blood. It is the same method used for blood donations. Haemochromatosis is not a blood disease, so many people receiving treatment at the Australian Red Cross Blood Service can still donate their blood, as did the member for Fowler, and I am sure he will share his story with the House shortly. The blood service is able to use blood donations from people with haemochromatosis to save lives, provided they are eligible to donate blood.

Haemochromatosis Awareness Week is so important because early diagnosis is vital to prevent organ damage, serious health problems and even premature death. It can have serious consequences for your health but it is easily treated with early diagnosis, and it is simple. Haemochromatosis Australia is a voluntary, not-for-profit support and advocacy group for people with haemochromatosis. The group's aim is to raise awareness of the condition to make sure that people are diagnosed with the condition before serious damage occurs. They have an information line which people can call for the cost of a local call to get more information about haemochromatosis. The number is: 13019028.

If you have been diagnosed with haemochromatosis it is important to talk to your family about being tested. Children are not usually tested until they are 18 years old. Early diagnosis gives the family the chance to take control of the condition and ensure, with simple treatment, that their lives are relatively unaffected. It can be difficult to explain these things, and the Haemochromatosis Australia information line can also help you talk to your family. I am pleased to support Haemochromatosis Awareness Week and I ask all members to join me in helping Haemochromatosis Australia achieve their vision that no Australian experiences the symptoms of haemochromatosis, by raising awareness of the condition in their electorate.

Michael McCormack (Riverina, National Party) Share this | Link to this | Hansard source

Haemochromatosis is the most common genetic disorder in Australia. One in 200 people carry the gene but only one in three of these carriers will actually develop the condition. It is a privilege to follow on from the member for Shortland, who I know has a passionate interest in this particular area, and I commend her for putting this motion to the House.

Even though statistics report that more than 100,000 Australians have the genetic predisposition for haemochromatosis, it is a silent disease, and not many have been educated about the issues it can cause if it remains undetected.

We heard the member for Shortland say that early diagnosis leads to a much better life for those people with this disposition.

From 13 to 19 August, public information sessions and events were held across Australia to raise awareness of this very common but not well-known genetic condition. The week's aim was to highlight the need for early detection and treatment so that those born with the genetic condition can lead normal, healthy lives. Not-for-profit organisations such as Haemochromatosis Australia are dedicated to highlighting the genetic disorder and making it well known throughout local communities. At present there are not many other awareness groups out there pushing for people to get themselves checked or promoting a routine blood test which could lead to an early diagnosis. Early treatment prevents complications and results in normal health and life expectancy.

Unfortunately, the symptoms of haemochromatosis can mask themselves as other complications in the body. Many people, particularly men, ignore the warning signs and just keep pursuing their everyday activities when a simple blood test could solve their problems. Haemochromatosis affects both men and women and is more likely to occur after the age of 40. However, there have been cases of the genetic disorder in younger people. People with haemochromatosis absorb too much iron in their diet and, if undetected and untreated, the excess iron can cause organ or tissue damage that can potentially result in premature death. According to Haemochromatosis Australia, the body typically stores around one gram or less of iron. However, a person with haemochromatosis absorbs a great deal more iron from their food than is necessary. Iron stores of five grams or more then build up inside the body. Organs such as the liver, heart and pancreas are affected and ultimately damaged. Without treatment, haemochromatosis can cause premature death.

Many issues arise when a condition such as haemochromatosis goes untreated. Because of the gradual build-up of iron in organs and joints the liver can become enlarged, leading to other serious diseases such as cirrhosis or liver cancer. However, it is not only the liver that can be destroyed by an overload of iron. Excess iron levels stored up over many years can also cause heart disease, diabetes, issues in the endocrine system, sexual dysfunction or arthritis. Iron overload might actually show no symptoms in the earlier stages, even though organ damage is occurring. A simple routine check-up with your general practitioner can lead to early detection, which is exactly what Haemochromatosis Awareness Week is all about—not finding a cure but promoting awareness of the condition in the community.

My late father-in-law, Bernard Shaw, who died in 2000 aged 61, was affected by this disorder. The electorate of the Riverina fortunately does not have a huge pocket of this genetic condition, but the knowledge still needs to be out there. I commend the member for Shortland for putting this to the House. Hopefully people who might be listening could go and have a check-up with their local GP and perhaps nip this in the bud.

Chris Hayes (Fowler, Australian Labor Party) Share this | Link to this | Hansard source

I, too, would like to thank the member for Shortland as she brings worthwhile matters to the attention of the House on so many occasions. On this occasion, she reminds us that last week was Haemochromatosis Awareness Week. During the week Haemochromatosis Australia, a voluntary advocacy and support group, has been raising awareness of this distressing medical condition.

Haemochromatosis is an inherent iron overload disorder. I was surprised how little people knew about it, including me, until recently. Haemochromatosis Australia notes that, in order for a genetic condition to be passed on, both parents must be carriers of the abnormal gene. More than 100,000 Australians, or one in 200 of European ancestry, have the genetic predisposition for this disorder. The number could be a lot higher considering the reports of high levels of haemochromatosis sufferers that go undiagnosed. In fact, it was only 10 years ago that I discovered that I am also a carrier of that defective gene. It is something I share with my mother, apart from my personality.

It came by chance and is something that I suppose many people in my situation would not have been tested for. Other than my mother being diagnosed, I probably would not have had the test in the first place to discover if it had been passed on to her sons. Hopefully, I am not showing any great effect of it at this stage, but if I start limping I will know the reason for it.

The high occurrence of this disorder certainly warrants greater effort and awareness of the symptoms. In my case, it was discovered by accident because my mother was being tested for something else. Awareness needs to be raised, as many people who are believed to be suffering from these symptoms are unaware of what relationship they have with haemochromatosis as a disorder. The symptoms include chronic fatigue, lethargy, skin pigmentation and joint pain which could be considered to be arthritic or lead to arthritis. In some cases extreme symptoms include liver cancer, diabetes and weakening of the heart muscles which can lead to heart failure. These are serious symptoms which can be very distressing if the person does not know the cause and about the possible treatments that are available.

The onset of the symptoms can be gradual, resulting in the condition not being diagnosed until middle age. The condition can be hard to diagnose, because the symptoms may be confused with those of other diseases. Iron overload disorder is more common in men than in women, due to the nature of the menstrual cycle. The disorder can be detected by a sternum test or possibly through a liver biopsy, as the iron accumulation is particularly damaging to that organ. Treatment involves regular blood removal to remove the excess iron. This is quite simple—it just means giving more blood. I have been giving blood for many, many years. It made no difference to the blood, and it was not even detected when I was giving blood that I was a carrier of this defective gene. People that have this disorder simply need to give blood regularly. This brings me to the fact that one in three Australians will need blood some time in their lifetime. But regrettably only one in 30 Australians actually donates blood. Giving blood, whilst it might take an hour out of your day, makes a lot of sense and one donation of blood can save up to three lives. I think that is a pretty important as well.

Part of the answer to haemochromatosis is early diagnosis and understanding that the treatment is not severe, which would put a lot of people's minds at rest, providing they know and know early the symptoms and also that there is a simple cure. (Time expired)

Karen Andrews (McPherson, Liberal Party) Share this | Link to this | Hansard source

I rise to speak on the member for Shortland's motion on Haemochromatosis Awareness Week which was held between 13 and 19 August. As we have heard, haemochromatosis is an inherited disorder which causes an iron overload in the body, resulting in the intestines absorbing too much iron from the diet. In normal circumstances, the body will only absorb the iron from the food we eat so that it can meet its daily requirements. However, those people who suffer from haemochromatosis will absorb much more iron than the body needs. This iron, needing somewhere to go, builds up in their bodily tissue, eventually leading to an overload that can lead to organ or tissue damage and potentially death if it is left untreated. Although haemochromatosis is a potentially life-threatening illness if left untreated, it is remarkably easy to detect and to treat. A simple blood test can let a patient's doctor know whether they have a higher than usual iron level which will lead to more specific tests that may confirm a haemochromatosis diagnosis.

It is estimated that one in every 200 people who are of European descent in Australia will suffer from haemochromatosis, making it the most common genetic disorder in Australia. If we were to take that number and make an estimate according to the national population of roughly 22½ million people, over 100,000 people would currently be affected or expected to be affected by haemochromatosis. The best way to treat haemochromatosis is to safely manage a patient's iron levels. This is done through what is known as venesection, which requires the removal of 300 to 500 mls of blood. This amount may sound familiar because it is the same process and amount that is used to donate blood. As withdrawing blood is the best method to help manage a person's iron levels and the disorder does not, as many may presume, affect the blood, the withdrawn blood can be safely donated to the Australian Red Cross. Inadvertently many haemochromatosis patients are helping save the lives of their fellow Australians, just by getting their necessary treatment.

Those patients who are unable to undergo venesection treatment can be prescribed iron chelators instead. Although there are potentially life-threatening consequences if left untreated, haemochromatosis can easily be detected, diagnosed and treated. However, like many other medical issues, the main issue is awareness. As I mentioned before, one in every 200 Australians will be affected by haemochromatosis and, until symptoms show, many people who may have a predisposition to developing the disease or the illness are unaware that they may be at risk. So awareness is all the more important considering how easy it is to detect and to treat the disorder so as to prevent permanent damage to the body. We are therefore fortunate that Haemochromatosis Australia does a fantastic job in promoting awareness of the disorder and providing sufferers with information on how to manage their treatment and also to provide support to them and their families. Without the hard work being done by organisations such Haemochromatosis Australia, who run awareness campaigns and pull together available information for the community's benefit, many Australians would be suffering from the effects of illnesses which could be offset by early detection or simple precautions.

I would like to note for my constituents that Haemochromatosis Australia will be holding a meeting at the Pines Shopping Centre at Elanora on the Gold Coast on 25 August to provide people with haemochromatosis and their families with the opportunity to discuss their experiences and find out more about how to live with the disorder. I urge all of my constituents who are unsure whether they may be at risk of developing haemochromatosis to consult with their GP. Once again, I would like to voice my support for the efforts of Haemochromatosis Australia and the fantastic work they are doing in the community in raising awareness about this easily manageable disorder.

Maria Vamvakinou (Calwell, Australian Labor Party) Share this | Link to this | Hansard source

The time allotted for this debate has expired. The debate is adjourned and the resumption of debate will be made an order of the day for the next meeting.