Please sign for Sorafenib to be available to fibromatosis desmoid tumour patients on PBS

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Please sign for Sorafenib to be available to Fibromatosis Desmoid Tumour patients on PBS. 

My name is Kate McKenzie and live in Australia. I have been diagnosed with  multiple Desmoid Tumours. I have FAP / Gardeners Syndrome however two of the Desmoid Tumours have been causing bowel obstructions (they have grown a lot over the last twelve months) and have got to a point where my doctors don’t have any treatment options for me. Three years ago I was diagnosed with Brain Cancer (Medellablastoma) and received Chemotheraphy and Radiation to treat this. At that point in time I had 1 Desmoid Tumour which had no effect on and since this have now grown an additional 4 Desmoid Tumours standard cancer methods have had no effect. I have tried 2 other medications in Australia approved Pharmaceutical Benefits Scheme (PBS) with no effect. 

The Desmoid Tumour Research Foundation in Philidelphia, America use this drug to treat these to great affect. This drug Sorafenib is available in Australia on the PBS but only to people suffering Liver Cancer. Because it is not available to me due to my condition does not meet the current criteria to receive Sorafenib on PBS my family and I are facing the cost of $100k per year because of this technicality. 

As a result, this petition is to get Bayer Australia and New Zealand to please review their patient criteria for this drug to enable me and other patients suffering from Desmoid Tumours like me to be eligible for this.

I would personally like to thank you for signing this petition to assist myself and fellow Desmoid Tumour Warriors access this medication to fight this disease. 

 



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