Tony Zappia (Makin, Australian Labor Party) Share this | Link to this | Hansard source

I take this opportunity to draw the House’s attention to and raise awareness of the work of the Dystrophic Epidermolysis Bullosa Research Association of Australia, otherwise known as DebRA Australia. DebRA Australia is a voluntary organisation that supports individuals with epidermolysis bullosa—otherwise known as EB—their families and health professionals. DebRA Australia was founded in 2005 and state organisations make up the membership of the national body. DebRA organisations are currently in Queensland, New South Wales, Victoria and South Australia. No government funding is provided to any of the DebRA groups, including the national body. It is only through community awareness and support, as well as funding from corporate Australia and other charitable organisations, that DebRA can make a difference. DebRA plays a major role in providing free dressings for EB sufferers right across Australia. Last year alone over $50,000 was spent on supplying essential daily dressings to people with EB. If people had access to free dressings through the public health system, the money raised by DebRA could otherwise be spent on research to find a cure. Among other things, DebRA also supports a new EB research database at St George Hospital in Sydney, which aims to collect more extensive statistical data—a first in Australia.

EB is a rare and distressing incurable genetic skin condition that affects all parts of the body, both internally and externally. There are approximately 1,000 people in Australia with EB of some type. EB at its worst can be fatal, but even in its mildest form it causes a life of pain and physical challenges. Some people spend hours every day dealing with blisters, wounds and destructive scarring.

People with EB require a multidisciplinary team of specialists to ensure adequate ongoing care. To put these requirements into perspective, burns victims require dressings for months until they heal. People suffering from EB have similar dressing requirements for their entire life. Dressings are to EB people what insulin and needles are to diabetics. In some types of EB, for those fortunate to make it to early adulthood there is the added risk of skin cancers that can cruelly cut their life short—not to mention the years of wounds and scarring which can rob them of the use of their hands and feet, leading to permanent disabilities and reduced mobility.

In Australia, in most cases, the only carers available are the parents. Children and adults require large amounts of support to bathe and do dressing changes that can take up to four hours a day. After all this is taken into account, many families still need to buy top-of-the-line silicone dressings that are expensive and not generally available through the various health systems.

For people with this condition, dressings are an essential part of life, not an option or a luxury. However, only a minority of people with EB can access free dressings from our public health system. Adequate dressings reduce the rate of infection and subsequent use of antibiotics and lengthy hospital stays. There is no national scheme to access dressings for people with EB. Members have stated that they have to beg for dressings via the local hospital and, if unsuccessful, have to settle for less suitable, cheaper products or even go without. For those who do have access to dressings, there are different processes in each state, area and even within hospitals, which also causes confusion to the families.

I have written to the Minister for Health and Ageing, Nicola Roxon, drawing her attention to this issue. It is my view the cost of subsidised bandages would be more than offset by the savings in medical costs incurred in treating the injuries and infections caused by inappropriate bandaging. Regardless of the cost, the quality of life of sufferers and their families should be considered by us all as a caring and compassionate society.

Harry Jenkins (Speaker) Share this | Link to this | Hansard source

Order! It being 8 pm, the debate is interrupted.