Jennie George (Throsby, Australian Labor Party) Share this | Hansard source

I second the motion. I begin by commending the member for Cook for bringing this very important matter to the notice of the House. I think it is important that in private members’ business we do have the opportunity to raise issues which have been brought to our attention by the constituents whom we represent in this chamber. As the member for Cook indicated, epidermolysis bullosa, commonly known as EB, is a rare genetic condition which is incurable. There are currently 229 patients formally diagnosed and registered with this frightful condition.

Two children in my electorate, Jayden O’Brien, aged five, and his younger brother Billy, aged three, suffer from this condition. As described, this condition is characterised by a blistering and/or a tearing of the skin’s surface with the slightest touch. Not only do their blisters require constant dressings but the two children whom I am aware of also suffer from nutritional problems caused by constant blistering and ulceration of the oesophageus. In fact, one of the children is fed directly from a tube inserted in his stomach. Just a couple of weekends ago I met the two children and it was very obvious, even at their young age, that walking has become increasingly difficult for them as has the use of their hands due to the skin fusing together from constant repair and healing.

In this context, each day their parents face the exhausting task of bathing and bandaging their children’s wounds. As their mum and dad told me, it takes hours and often necessitates pain medication for the children while their wounds are being attended to. The dressings to treat this condition are very expensive, even with subsidised supplies from the Sydney Children’s Hospital and financial assistance from the EB national association, DebRA. The O’Brien family has told me that it spends around $450 a month on dressings and on assistance in full-time care for one of the children.

In recognition of these enormous financial imposts facing a one-income family, members of the local Shellharbour Sunday bowlers club have raised funds to help the family meet their medical expenses. As club president Phil Gall said recently:

It’s very rewarding: our fellas are a generous mob, specially when there is a worthy cause like this one.

In that regard I would like to place on record tonight my thanks to members of the Shellharbour Sunday bowlers club, to Wals Pharmacy at Warilla and to all who assisted in the recent successful fundraising event at Warilla Bowls. It certainly helped the family meet their ongoing and expensive medical costs.

Some time ago I pursued the plight of the O’Brien family in representations I made to the Parliamentary Secretary to the Minister for Health and Ageing. In her reply I was advised that neither the PBS nor Medicare could currently be accessed to help meet the costs of medical aids and appliances. It was noted, and I quote from the parliamentary secretary’s letter:

… there is a growing recognition that out of pocket costs for necessary medical aids and appliances in the community setting are rising and that eligibility and the level of assistance provided is not consistent across jurisdictions.

That certainly is the case and, from what I understand, some private medical insurance does provide some cover but in the case of the O’Briens they are not in a position to draw on that. One glimmer of hope that I detected in the parliamentary secretary’s reply was the statement:

… the Commonwealth Government is currently considering the issues surrounding support for EB dressings. Support for aids and appliances such as EB dressings is one of a number of current commonwealth/state health reform issues.

I was pleased that the issue had, at least, been noted and registered on the list of issues that the Commonwealth is discussing, but it provides cold comfort in the meantime in addressing the needs of the O’Brien family. In that context I do commend the suggestion proposed in the motion moved by the member for Cook that the Australian government establish a 12-month trial program to ‘fund delivery of dressings directly to patients currently registered’ on the EB registry ‘from suppliers identified through a public tender process’. (Time expired)

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