Scott Morrison (Cook, Liberal Party) Share this | Hansard source

I move:

That the House:

(1)

notes that Epidermolysis Bullosa (EB) is a rare genetic condition characterised by skin fragility and blister formation, which is incurable and in its most severe forms can be fatal in infancy and childhood;

(2)

notes that children afflicted by EB are known as “butterfly children” and are required to pierce, drain and dress their blisters each day in an endless routine that lasts up to three hours in the most severe cases;

(3)

notes there are currently 229 patients formally diagnosed and registered on the Australasian EB Registry and that based on international estimates there may be up to 1,000 people affected by this condition in Australia, of whom 100-150 have the most severe form;

(4)

acknowledges the support and assistance provided to sufferers and their families by DebRA Australia, the national Dystrophic Epidermolysis Bullosa research association;

(5)

recognises that families with a child suffering from EB have problems accessing dressings because of expense or availability from the public system, and in the more severe cases families must spend up to $5,300 per month on dressings; and

(6)

calls on the Australian Government to establish a 12 month trial program, managed by the Department of Health and Ageing in partnership with DebRA, to:

(a)

fund delivery of dressings directly to patients currently registered on the Australasian EB registry from suppliers identified through a public tender process;

(b)

provide access to a dedicated nurse in each state and territory for patients suffering from EB; and

(c)

review the program upon conclusion, with a view to establishing a permanent scheme.

In July this year, after putting our little girl to bed my wife and I sat down together on Sunday night to watch Domestic Blitz on the Nine Network. It is not uncommon for my wife to become very emotional at the end of these types of programs, but on this occasion I was right there with her and we were deeply moved by the story of Joshua Gibson, a brave young boy from the Sutherland Shire, in the neighbouring electorate of Hughes, who, together with his family, received a generous new home renovation.

Joshua is one of 229 Australians who suffer from a rare genetic skin disorder called epidermolysis bullosa, EB, and who have been officially diagnosed and listed on the national EB register. According to DebRA, the national research association for EB, EB is caused by a genetic change or mutation in one of the genes that code for the proteins that glue the skin. This makes the skin as fragile as wet tissue paper. The EB children are often known as ‘butterfly children’ because their skin is as fragile as a butterfly’s wings. In their recent submission to the government, DebRA noted that the slightest knock or rub, rolling in bed or, sadly, a mother’s hug can cause blistering. The fragile nature of Joshua’s skin means he must spend life wrapped in bandages to avoid severe skin damage, which can cause severe pain. The constant damage can cause fingers and toes to completely fuse together, and this is often the case, particularly as children grow older.

DebRA noted that children with EB regularly, sometimes daily, need their blisters pierced, drained and dressed in an endless routine, which lasts three to four hours in the most severe cases. This horrific job is typically undertaken by their mother or their father, and in Joshua’s case by his mother, Kylie, who shared what it was like to do this on the Domestic Blitz program. As a parent, I cannot begin to understand the torment this must be for parents like Todd and Kylie Gibson, or indeed for Michael Fitzpatrick, the president of DebRA and his wife, Bree, whose nine-year-old son, Connor, also suffers from this dreadful condition. This is a mixture of courage and love that defies description and inspires profound admiration. As Sarah Palin recently remarked: ‘Children with disabilities summon a very special kind of love from their parents.’ Even the eating of solids can have a devastating effect on the mouth and the oesophagus, with many taking their food, medication and painkillers through a feeding tube directly into their stomach. Damage to the eyes can also result in children having to sit in the dark for up to two or three days until they have healed. In its most severe forms the disorder can be fatal in infancy and childhood.

In the course of speaking to the member for Farrer in the preparation for this debate today, I learned of the tragic case of Xantha Maree Marshall, a beautiful little girl who passed away from EB last year. Her grandmother lives in the member for Farrer’s electorate, and Xantha lived in the neighbouring electorate of Indi.

In addition to the physical and emotional toll of EB, families have to spend up to $5,300 a month on medical dressings to protect their child’s skin and ensure they can live a life as normally and as free from pain as possible. Unlike in New Zealand, there is currently no national scheme in Australia which allows families like the Gibsons comprehensive free access to proper medical dressings, such as Mepilex, that have a profound and positive impact on the health and wellbeing of their children. That is why Xantha’s family have set up the Xantha Maree Foundation to assist with the cost of bandages and medical expenses and it is why DebRA each year provides more than $50,000 worth of support to families to assist with their dressings. A national survey on dressings conducted by DebRA of parents and families involved with children who have EB found that 45 per cent of members had problems accessing dressings because of expense or availability, and only 35 per cent were able to access dressings through the public system. Of those 35 per cent, only two-thirds received the types of dressings they required.

That is why the member for Hughes and I have called on the government and our own party to provide bipartisan support for a $5 million national trial to help Joshua and other Australians listed on the national EB registry get free access to medical dressings. The scheme would provide dressings directly from a preferred supplier, selected from a tender process, free of charge to the front door of the 229 Australians currently on the national EB registry. The scheme would also involve the employment of an EB nurse in each state and territory to provide advice and care to families. The trial proposal is based on a submission from DebRA to the government, which I will seek leave to table at the conclusion of my remarks.

I wish to thank those members from both sides of the House for their support of this motion tonight and outside this place, namely the members for Aston, Wentworth, Farrer, Greenway, Hume, Wannon, Mitchell, McMillan, Gippsland, Bennelong and Newcastle. This is an affordable, necessary and compassionate scheme that befits our status as a modern, prosperous and caring nation. I call on the government and my own party to answer the call of these children and their families for their support. I seek leave to table the submission.

Leave granted.

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