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11 Feb

Sharing this report by the McKell Institute Australia, published in OrphaNews, the newsletter of The Rare Disease Community, on the 17th January 2015.
This report is also supported by Rare Voices Australia
www.rarevoices.org.au
http://mckellinstitute.org.au

A report by the McKell Institute Australia has concluded that Australia’s system of funding rare diseases, conducted by the Life Saving Drug Program (LSDP) is in need of reform. This informative report highlights several challenges involved in bringing treatments for rare disease patients in Australia. The report identifies several problem areas including the fact that there is no common definition for rare diseases in Australia. The report also highlights that only two therapies, Kalydeco for Cystic Fibrosis, and Soliris for Atypical Hemolytic-Uremic Syndrome, are currently approved under Australia’s current program for rare disease therapies.

Additionally, the report emphasises that Australian rare disease patients wait considerably longer than other western countries to access drugs, which sometimes could be as long as 8 years. The report makes five recommendations to overhaul the current program commencing with the formulation of a national strategy for rare diseases. Also recommended is flexibility in the analysis of cost-effectiveness and assessment of new therapies for rare diseases.


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