We can do better. We will do better.
Nobody is speaking for these people, there is no research funding, no funded treatments, nothing. It’s as though the system has decided that rare is just too hard.
For those Australians with a rare or less common cancer, we have at large forgotten about their plight. Over 20 years, patient survival rates have only improved marginally if at all. Our research into rare cancers remains disappointingly and disproportionately low as is the funding for treatments through the Pharmaceutical Benefits Scheme (PBS). It is hard to believe, over the years with advances in medical science and technology, we have achieved so little for these group of patients and their families.
Rare Cancers Australia (RCA) is determined to increase awareness, highlight the need for further research and initiate policy discussion and action to improve the lives and outcomes of all Australians living with a rare or less common cancer. RCA is currently working with government, clinicians and industry for change.
Addressing the systemic neglect of rare cancers within government is a key objective of Rare Cancers Australia. Our national health system is intrinsically geared towards coping with common diseases – the “rule” dominates and the “exception” is ignored.
Rare cancers individually are the exceptions to the rule however when considered as a whole their impact on the community is devastating. A primary goal of RCA is to ensure the Federal Government understands the need for urgent reform and action around cancer research funding, approval and funding of medicines and early diagnosis and detection of rare cancers. Our work involves constant representation in Canberra, participation in both Senate and Parliamentary enquiries, submissions to the PBAC and constant interaction through and with mainstream and social media.
Our goal is that these cancers, for which there are over 200, will never be forgotten or ignored again.