National Epidermolysis Bullosa Scheme Helping Those In Need
This week, 26-31 October, is International Epidermolysis Bullosa Awareness Week and an important opportunity to highlight this rare and debilitating genetic disease.
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28 October 2010
Ten months in, 46 Australians are already benefiting from the Australian Government’s National Epidermolysis Bullosa Dressing Scheme.
This week, 26-31 October, is International Epidermolysis Bullosa (EB) Awareness Week and an important opportunity to highlight this rare and debilitating genetic disease.
EB most commonly affects children and is characterised by extremely fragile skin and recurrent blister formation occurring spontaneously or following minor trauma.
Treatment involves managing wounds and blisters, as well as preventing infection and protecting the skin from trauma. This requires using specialised dressings and bandages which, without government subsidies, can cost families in excess of $5,000 a month.
Apart from the pain and difficulty experienced by sufferers every day - the impact of EB on families can be financially devastating.
That’s why in the 2009-10 Budget the Australian Government committed $16.4 million over four years to establish the National Epidermolysis Bullosa Scheme.
The scheme assists individuals and families in meeting the cost of dressings as well as improving access to them.
A month’s supply of dressings are delivered to eligible patients’ homes for a fee equivalent to one Pharmaceutical Benefits Scheme co-payment. The dressings reduce infections, complications and unnecessary hospitalisations and improve quality of life for sufferers.
BrightSky Australia administers the scheme on behalf of the Government and also provides educational resources to people with EB and appropriate health professionals and clinics.
A clinical advisory committee comprising health professionals with expert knowledge, skills and experience in inherited bullosa skin disorders, specifically EB, makes clinically-based recommendations to the government to ensure best treatment practice for those registered on the scheme.
The scheme complements the services provided to people with EB for treatment during public hospital care, and also relieves not-for-profit organisations that provide financial assistance through community fund-raising to help people with EB obtain the necessary dressings.
More information about the scheme, including eligibility guidelines and how to apply can be found at www.ebdressings.com.au
For all media inquiries, please contact the Minister's Office on 02 6277 7220
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