Scott Morrison (Cook, Liberal Party) Share this | Link to 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.

Bruce Scott (Maranoa, National Party) Share this | Link to this | Hansard source

Is the motion seconded?

Jennie George (Throsby, Australian Labor Party) Share this | Link to 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)

Danna Vale (Hughes, Liberal Party) Share this | Link to this | Hansard source

I warmly congratulate the member for Cook for raising this important issue of epidermolysis bullosa, highlighting the many challenges faced by Australian families who have a family member suffering from this unusual condition. I support the moving of this motion. Children with epidermolysis bullosa, or simply EB, are commonly known as ‘cotton wool children’ or ‘butterfly children’. EB is a rare genetic skin disorder marked by fine, fragile skin, as fragile as a butterfly’s wings, which forms painful blisters either spontaneously or following minor bumps or knocks, often as a result of the slightest touch. This is the reality for people living with EB, which can affect all parts of the body both externally and internally. EB can appear in varying degrees of intensity and type. EB at its worst can be fatal and, 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 by bandaging the affected areas with protective coverings.

This matter was brought to my attention last year by a family in my electorate. The Gibson family have a five-year-old little boy called Joshua who suffers from this condition and needs the constant care and support of his mother and father. Every day, or in some cases every second day, children like Joshua and adults with EB need their blisters pierced, drained and dressed in a routine that lasts up to three hours a day in the most severe cases. The visible wounds on the skin are sometimes only the outside manifestation of this rare condition, because even the eating of solid food can have a devastating effect on the mouth and oesophagus. As a result, many EB sufferers take their food, medication and painkillers through a feeding tube directly into their stomach.

In most cases, the care of the person living with EB falls to the parents, especially the mother. This can be a 24-hour-a-day, seven-day-a-week job, with little or no support options available to many families. This has a significant impact on families, with many living in isolation, as they can often become disconnected from their friends and community. Add to this the ongoing financial burden of medication, most particularly wound dressings and bandages, and it is no surprise that the resultant stress can lead to relationship breakdown within some of those families.

There are significant lifestyle changes required, with at least one parent needing to give up paid employment to take on the role of full-time carer. Children also need support with access to education, with many needing to attend school with a teacher’s aide. Parents are always on call if needed and must spend large amounts of time assisting children to catch up on missed learning opportunities and assisting school care to adapt to the children’s needs.

The National Dystrophic Epidermolysis Bullosa Research Association of Australia, otherwise known as DebRA, and its member state branches are seeking the support of the federal government to fund and implement a national dressings supply scheme for around 229 children and adults on the national EB register in Australia. This will ensure that all Australians have access to care which is medically accepted as current best practice and addresses current inequities, because the present healthcare system does not have a clear strategy to deal with patients with EB. 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 proposes that the national scheme be set up with an indexed budget of $5 million, whereby dressings are made available to eligible patients. DebRA is willing to coordinate and assist with the administration of the scheme. This would also bring Australia into line with countries such as New Zealand, the United Kingdom and other developed countries, which have long-established national schemes. The scheme would provide an equitable framework to make dressings available and it would improve the quality of life of individuals and families through improved rates of healing, reduced pain during dressing changes and a reduction in the use of other medications. It would result in greater patient compliance, fewer hospital admissions and cost savings through economy of scale. There would be greater economic productivity through increased school attendance and work participation. It would also reduce the financial burden on families already struggling with the added cost of caring for a person with a major medical condition. It would be a reliable system that is not constantly at risk of review, change or termination and it would allow improved social and community involvement for the families. It was inspiring to meet with Gavin O’Brien this afternoon. I commend this motion to the House.

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