Mr GEORGANAS (1:54 PM) —I rise today to speak about a little-known, inherited blood disease known as thalassemia, which is carried by about one per cent of the Australian population. Earlier this month on 8 May it was World Thalassemia Day. There are about 450 people with thalassemia major in Australia and about 40 of those live in South Australia. It is important for the broader community to understand a little about thalassemia so that people who live with the condition do not feel that they have to worry about the stigma that has traditionally been associated with the disorder. Without treatment the condition is fatal. The body’s organs are deprived of oxygen because the structure of the haemoglobin is abnormal and the cells die after a few weeks instead of lasting around four months like those with normal haemoglobin.

In the seventies people with thalassemia usually died in their teens, but with the introduction of a drug which helps to reduce iron absorption people have a much better prognosis. However, the procedure is not easy, with people having the drug pumped under their skin for between eight and 12 hours a night up to seven days a week. It is important that people with thalassemia are supported to live as normal a life as they can under these circumstances. A big part of that is getting people to understand the disease and to understand that people can and do manage the condition.

Sadly, people have traditionally felt that there was a social stigma attached to letting people know that they had thalassemia. I hope that is becoming a thing of the past, because no-one should have to feel that they have to keep such a big part of their life a secret for fear of what another person will think. In bringing this disease to the attention of members of the House, I hope that I can make a small contribution to raising awareness and understanding.