National Epidermolysis Bullosa Dressing Scheme

Summary for National Epidermolysis Bullosa Dressing Scheme

Page last updated: 12 March 2014

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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 the National Epidermolysis Bullosa Dressing Scheme website.

Australian Privacy Principle (APP) 5 Notification

Applicants for the National Epidermolysis Bullosa Dressing Scheme

The Paraplegic & Quadriplegic Association of NSW trading as BrightSky Australia on behalf of the Australian Department of Health is collecting this personal information about you in order to allow the Department to determine your eligibility to receive benefits under the National Epidermolysis Bullosa Dressing Scheme (NEBDS).

The Department can be contacted by telephone on (02) 6289 1555 or free call 1800 020 103 or by using the online enquiries form on the Health website.  BrightSky Australia can be contacted by telephone on 1300 290 400 or by using the online enquiries form on the National Epidermolysis Bullosa Dressing Scheme website.

If you do not provide all of the personal information as required in the Application Form and Review Form, the Department will not be in a position to consider your application.

The Department will disclose your personal information and Medicare card number to the Department of Human Services in order to ascertain your eligibility status.

The Department and BrightSky Australia have APP privacy policies which you can read on the Health website and the National Epidermolysis Bullosa Dressing Scheme website. You can obtain a copy of the Department’s or BrightSky Australia’s APP privacy policy by contacting the Department or BrightSky Australia using the contact details set out above.

The APP privacy policies contain information about:

    • how you may access the personal information the Department and BrightSky Australia holds about you and how you can seek correction of it; and
    • how you may complain about a breach of the Australian Privacy Principles
Both the Department and BrightSky Australia are unlikely to disclose your personal information to overseas recipients.

Health Professionals For The National Epidermolysis Bullosa Dressing Scheme

The Paraplegic & Quadriplegic Association of NSW trading as BrightSky Australia on behalf of the Australian Department of Health is collecting this personal information about you to make a determination about your patient’s eligibility for the Scheme.

The Department can be contacted by telephone on (02) 6289 1555 or free call 1800 020 103 or by using the online enquiries form on the Health website.  BrightSky Australia can be contacted by telephone on 1300 290 400 or by using the online enquiries form on the National Epidermolysis Bullosa Dressing Scheme website.

If you do not provide some or all of the information as required in the Application Form and Review Form, the Department may be unable to determine your patient’s eligibility for the Scheme.

The Department and BrightSky Australia have APP privacy policies which you can read on the Health website and the National Epidermolysis Bullosa Dressing Scheme website. You can obtain a copy of the Department’s or BrightSky Australia’s APP privacy policy by contacting the Department or BrightSky Australia using the contact details set out above.

The APP privacy policies contain information about:

    • how you may access the personal information the Department and BrightSky Australia holds about you and your patient and how you can seek correction of it; and
    • how you may complain about a breach of the Australian Privacy Principles
Both the Department and BrightSky Australia are unlikely to disclose your personal information to overseas recipients.