STATEMENTS BY SENATORS;Haemochromatosis – 26 Nov 2014

 This afternoon, I am going to speak on one of my favourite topics: inherited iron overload disorder or hereditary haemochromatosis. A great deal was known and said about iron deficiency and, while this is a very real and important problem, less common is the knowledge that some people have the opposite problem: their body builds up too much iron. Haemochromatosis is an inherited condition which affects roughly one in 200 people of northern European origin, and on average one in eight are genetic carriers. As such, it affects over 100,000 people in Australia and is actually our country’s most common genetic disorder.

I talk a lot about haemochromatosis in this place, and I intend to continue doing so to raise awareness of this condition. There are a number of reasons why raising awareness of the haemochromatosis is so important. First of all, haemochromatosis is heavily underdiagnosed. This is because the initial symptoms can be caused by other medical conditions or even just stress. These symptoms include fatigue, weakness, lethargy, joint pains, sexual dysfunction and psychological disorders, such as impaired memory, mood swings, irritability or depression.

Another thing that makes haemochromatosis difficult to diagnose is that the symptoms may develop slowly, and can vary from one person to another. They could be influenced by other lifestyle factors, such as age, diet, alcohol intake and blood loss through blood donation or menstruation.

It is important, however, that haemochromatosis be detected, because the later symptoms can be quite catastrophic. I am talking about diabetes, cardiac arrhythmia or liver disease, and eventually the failure of organs such as the heart, liver or kidneys, which may require expensive treatments such as dialysis or transplants.

While many people living with haemochromatosis—if unaware of their condition—could go on to develop these life-threatening symptoms, it does not have to be this way. The treatment for haemochromatosis is simple and cheap.

Our body’s iron stores are depleted by blood loss, so haemochromatosis patients are treated by blood-letting, or therapeutic venesection, which is performed by the Australian Red Cross, and is basically the same process as blood donation. In fact, blood extracted through therapeutic venesection can be donated, as long as patients pass the same screening process as regular blood donors. But, if we are going to get people with haemochromatosis diagnosed and treated, and avoid the worst consequences of the condition, then we must raise awareness.

We must get general practitioners thinking about whether their patients might have hereditary haemochromatosis, and the patients themselves questioning their GPs about whether an iron overload might be the cause of their symptoms.

A fantastic organisation I have worked with and supported over many years, Haemochromatosis Australia, provides support and advocacy for people living with haemochromatosis. Over the past 20 years, Haemochromatosis Australia has been working hard to raise awareness of the disorder in the general public and the medical profession. In August this year, I was pleased to launch Haemochromatosis Awareness Week at Haemochromatosis Australia’s annual general meeting in Hobart. The AGM followed an information session addressed by various experts. One of the speakers, Barbara De Graaff from the University of Tasmania, discussed the findings of her study into the health economics of screening for hereditary haemochromatosis—a topic I will return to later.

During the same week I opened Haemochromatosis Australia’s Overload exhibition, an annual fundraiser for the organisation, and purchased one of the artworks. I am happy to continue supporting Haemochromatosis Australia because of the incredible contribution they make to supporting and advocating for people with hereditary haemochromatosis, and the benefits their work brings to Australia’s health system.

One of my achievements during my time in this place was to secure $30,000 funding for a conference on haemochromatosis with the help of the then Minister for Health, Tanya Plibersek. It is a small amount of money in the context of the federal budget, but, for Haemochromatosis Australia, who received the funding, it went such a long way, and I thank Ms Plibersek for her help and support.

The conference, held in May this year at the Austin Hospital in Melbourne, featured professional and consumer streams, and promoted the exchange of knowledge between researchers, clinicians, primary care workers and people affected by iron overload. A panel discussion at the end of the conference featured some of the most eminent experts in genetics, medicine, health policy and health-related law. Experts such as Professor Lawrie Powell, the Director of Research at the Royal Brisbane and Women’s Hospital, who has received the Marcel Simon Prize, awarded by the International Haemochromatosis Research Foundation in recognition of his scientific achievement in the field of genetic iron overload diseases. There was also Emeritus Professor Richard Smallwood AO, who has published over 250 scientific and clinical papers, mostly in his specialty of liver diseases. Professor Smallwood has served as President of the Australian Medical Council, the body which accredits medical schools, and has been President of the Australian College of Physicians, and from 1999 to 2003 was Australia’s Chief Medical Officer. There was also an international expert, Dr Paul Adams, the Chief of Gastroenterology at the University of Ontario, who was principal investigator in a study which screened over 100,000 people for iron overload. Dr Adams has studied many aspects of iron overload, including the cost-effectiveness of screening.

Other experts at the conference included Professor Martin Delatycki from the Austin Hospital, a clinical geneticist and expert in genetic screening; and Professor Loane Skene from the University of Melbourne, an expert in medical law and ethics who serves on numerous state and federal advisory committees.

The panel discussion focussed on whether Australia should screen for hereditary haemochromatosis and there was unanimous agreement from the speakers that we should. This is backed up by data from overseas showing substantial cost and human benefits from screening. At the moment, Medicare covers limited genetic screening for haemochromatosis through a test to detect mutations to the HFE gene. This is provided for under Medicare Benefits Schedule item number 73317. In the last financial year, a total of 59,504 services were provided under this item. In order to be eligible for this item, the patient must have a first degree relative—such as a sibling, parent or child—with haemochromatosis, or must have tested twice for elevated iron levels. Haemochromatosis Australia have been advocating for this benefit to be extended to all 18-40 year olds, regardless of their circumstances. If more patients are tested and subsequently diagnosed, many Australians with haemochromatosis could avoid falling ill. Not only would early detection and treatment save a lot of money for the health system, it would increase the pool of regular blood donors, thereby increasing Australia’s blood supply.

To explain the benefits, consider the current requirement that a patient must test positive for high iron levels before they can receive a Medicare benefit for the test. Those who have met this condition may already be suffering the symptoms of iron overload and the treatment of their symptoms would be very costly to the health system. Surely it would be better to have the genetic condition diagnosed before a patient goes on to develop iron overload and its symptoms.

We should also keep in mind that many Australians with the genetic mutation for haemochromatosis will not actually go on to develop iron overload. Unless a first degree relative of these patients is found to have haemochromatosis, or be a carrier of haemochromatosis, those patients will not be eligible for this benefit. However, by finding out they have the genetic mutation, or that they are a carrier, they can determine the risk to their family members, especially their children.

It is expected that with a larger volume of services the cost of the test could reduce from $36.45 to $20. The test could also be made even cheaper if combined with other routine screening tests, such as a cholesterol check, prostate antigen test or Pap smear.

Around 265,000 Australians move into the proposed eligible age range for this test each year. A 50 per cent take-up of screening would result in an annual cost of between $2 million and $3 million. Once detected, the subsequent treatment of haemochromatosis patients by venesection not only is inexpensive, non-controversial and drug free but actually benefits our health system by contributing to emergency blood supplies.The cost of testing and treatment is substantially less than the potential cost of treating the symptoms of haemochromatosis when it is either not diagnosed or diagnosed too late.Even where haemochromatosis has been diagnosed, in many cases it has been after serious and sometimes irreversible health impacts have occurred. So I ask the simple question: why not make the subsidy for genetic testing of haemochromatosis more widely available when it has the potential not only to prevent serious illness but to save our health system money?I am not exaggerating when I say that the detection and prevention of hereditary haemochromatosis could save lives.

I understand that Haemochromatosis Australia representatives have had very positive meetings about this subject with the Assistant Minister for Health, Senator Nash , and the shadow m inister, Ms Catherine King. Extending the Medicare Benefits Schedule , as proposed by Haemochromatosis Australia , is , of course , a matter for the independent Medical Services Advisory Committee. The next step is for the organisatio n to put its proposal to the c ommittee. Haemochromatosis Australia ha s various medical experts among its membership who will be able to explain the medical evidence that will support the argument for the proposal. I wish the organisation the very best of luck with its proposal.