April 21, 2016 at 11:09 AM

Petitioning the Prime Minister of Australia Malcolm Turnbull and Health Minister Sussan Ley


Australian loved ones with asbestos cancer and other rare diseases are dying, without being given the chance of survival or hope, being offered to sufferers of more common diseases! 

This is not only unjust – it is un-Australian!  

In Australia, drug trials for treating many rare diseases are almost non-existent, as drug companies find it is not financially viable to conduct trials, due to the relative small number of sufferers compared to more common diseases, such as melanoma.  Not only are trials an important part of helping find cures, and are necessary to obtain data to build a case to justify a drug being listed on the PBS, importantly, they also give sufferers hope - where often none exists!

The Government needs to step up and fund treatment trials for asbestos cancers and other rare and less common diseases! 

Drugs not listed on the PBS for treating asbestos cancer and other rare diseases are prohibitively priced, this often prevents desperate sufferers with no other treatment options from accessing them!

A good example of the unfairness of the system is where a drug; that has demonstrated benefits, in extending and giving better quality of life, to some sufferers of the rare terminal asbestos cancer, mesothelioma; has been listed on the PBS for treating melanoma - which we think is fabulous!  This means melanoma sufferers pay only up to $38 per treatment, whilst mesothelioma and other rare cancer sufferers are paying between $5,000 and $10,000 per treatmentfor the same drug! 

What’s important to understand is; pharmaceutical companies are often not even attempting to apply to list drugs, with promise to treat rare diseases, onto the PBS, as the application requirements are too demanding and can’t be met in a practical time frame, due to the small number of sufferers involved and the lack of trial data.

Please sign at and share – you never know who could be a sufferer of a rare disease next – it could be you!