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National Epidermolysis Bullosa Dressing Scheme

Summary for National Epidermolysis Bullosa Dressing Scheme

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National Epidermolysis Bullosa Dressing Scheme

In the 2009-10 Commonwealth Budget, the Government committed $16.4 million over four years to establish the National Epidermolysis Bullosa Dressing Scheme (the Scheme) to support eligible people in meeting the high costs of treatment and ensure a nationally consistent level of care.

Epidermolysis Bullosa (EB) is a rare genetic disease that primarily affects children and is characterised by extremely fragile and blister prone skin. Management of this disease requires frequent application of specialised dressing and bandages to reduce skin damage and the risk of infection. There are approximately 250 patients requiring specialised dressings, which may cost more than $5,000 per month for the most severe form of the disease.

The Scheme which commenced on 1 January 2010, is administered by BrightSky Australia, a division of the Paraplegic and Quadriplegic Association of New South Wales, on behalf of the Australian Government.

BrightSky Australia manages patient applications, maintain a patient registry and source and supply dressings to eligible patients. In addition they deliver educational resources to people with EB and appropriate health professionals and clinics and provide secretariat services to the Clinical Advisory Committee.

The Clinical Advisory Committee, comprising health professionals with expert knowledge, skills and experience in EB, recommended the eligibility criteria and the Schedule of Dressings for the Scheme. The committee will continue to advise on best treatment practices for those registered on the Scheme.

Access to the Scheme is restricted to those patients who meet the eligibility criteria. Eligible patients will receive the required dressings delivered to their home for a monthly contribution, equivalent to one Pharmaceutical Benefits Scheme copayment.

Information on eligibility, how to apply and the application form are available from www.ebdressings.com.au.