One of the problems with having a rare cancer is that there is very little money that goes into research and as a consequence the cost of treatment doesn't get funded by the PBS. Which means that treatment costs are exorbitant. Most people just can't afford it. The corollary to that is another digit in the death from cancer statistics.
Rare cancers cause 50 per cent of cancer deaths and only get about 10 to 12 per cent of research funding and about the same per cent of drug funding.
Fewer numbers of patients means fewer trials run and fewer drugs approved. Clinical trials aren't designed for rare diseases because, ironically, there are so few people to do research on. Prof David Thomas of Kinghorn Cancer Centre and the Garden Institute says that it's hard to do research because if you need 100 people to prove a point and you can only find one in every clinical lifetime, "how much tougher is it to do research? How much more costly? How much less incentive is there for commercial pharmaceutical companies to invest in a drug in a rare disease? So when it comes to the Pharmaceutical Benefits Advisory Committee, who make decisions about how we as the public invest in new drugs, the evidence just isn't there".
Up till now the reality has been that those of us with rare cancers don't matter - because we are such a small percentage of the population. Fortunately things might change. Charity Rare Cancers Australia is launching a report and calling for action to rectify this. Their recommendations include more funding for local trials and a flexible approach to gain access to subsidised medications. It will be the first time that one-third of people who will die from cancer will get their voices registered.
"Don't forget about us. We pay taxes too and our diseases are just as horrible as anybody else's diseases." Let's hope the government listens.
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