HELP GIVE SUFFERERS OF ASBESTOS CANCER & OTHER RARE DISEASES HOPE & A CHANCE TO SURVIVE!
This petition had 27,409 supporters
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!
We need your support! The Bernie Banton Foundation is lobbying the Australian Government, via the Health Minister, the Hon. Greg hunt, to fund trials of drugs with the potential to treat rare diseases, and to reform the Pharmaceutical Benefits Scheme (PBS) application requirements that currently make it impractical for pharmaceutical companies to apply to have valid drugs listed on the PBS.
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 treatment – for 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.
The current PBS application requirements disadvantage sufferers of rare diseases – it must be overhauled!
Industry based discussion papers have made a convincing case on how the PBS application requirements could be changed to allow valid drug applications to be fast tracked onto the PBS, without losing the integrity of the system. All that is needed is for the government to see the need for change and the will to do so!
Please sign and share – you never know who could be a sufferer of a rare disease next – it could be you!
Karen Banton - CEO
Rod Smith Awareness and Support Co-ordinator
Bernie Banton Foundation
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Bernie Banton Foundation needs your help with “To the Federal Minister for Health: Give sufferers of asbestos cancer and other rare diseases hope, and a chance to survive! Fund trials and change the application requirements to allow valid drugs to be fast tracked onto the PBS application process.”. Join Bernie Banton Foundation and 27,408 supporters today.