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

I welcome the opportunity to speak to this motion, which quite properly highlights the hardships faced by those families affected by this terrible disease, epidermolysis bullosa. On 14 May in the adjournment debate in this place I raised my concern over the hardship and suffering of people with epidermolysis bullosa and the stress, both financial and personal, it places on family members and carers of EB sufferers. I have also spoken on several occasions with Laraine Frost, a Makin resident whose family members suffer from this terrible skin disease. Laraine is one of hundreds of Australians who deal with the disease daily and who live with the emotional and financial demands it causes. Only today I met with a delegation of people representing EB sufferers. I understand the delegation also met with the Minister for Health and Ageing, Nicola Roxon. Amongst the delegation was a young man by the name of Gavin O’Brien, who had both his arms, the full length of them, heavily bandaged. Gavin’s bandaging is typical of the daily dressings required by many EB sufferers.

Earlier this year I also wrote to the health minister about this very matter, bringing to her attention my concern for EB sufferers and their families. I was heartened by the minister’s reply. The member for Throsby made reference a moment ago to a similar reply that she has received from the minister’s department. Effectively, the minister is saying that she is certainly aware of the needs of people suffering from this disease and that she will be responding in due course. I understand that there is a review taking place right now of some of the health services provided by the government, with an interim report expected sometime before the end of this year. I certainly look forward with interest to that report. It is heartening to read that the Commonwealth is considering the issues surrounding support for EB dressings, and for that I thank the minister.

I also know that DebRA, the National Dystrophic Epidermolysis Bullosa Research Association of Australia, which has been referred to by other speakers tonight, has been pleading with the federal government to provide assistance for victims and their families for some years. Whilst I understand that some state governments provide some level of assistance, the cold, hard reality is that the assistance is simply not enough. As other speakers have already highlighted, the cost of these dressings runs into thousands of dollars. In fact, whilst in some cases the fee might be somewhere in the vicinity of $3,000 to $5,000 per month, it can be as high as $12,000 per month for the special dressings that are required. What is sadder is that there is no consistent support found throughout Australia, and the assistance that is provided to families is indeed very limited. I also understand that in other countries, including the UK, New Zealand and the Netherlands, governments do recognise the needs of EB sufferers and provide assistance as part of their normal health services. Perhaps the minister might take that on board when the review is handed down to her.

Debate interrupted.

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