I initially posted this in the comments on Eve’s Story, but actually, there are cancer facts here which are not, for some reason, part of the information supplied by this campaign, and which I feel need to be known and understood more widely.
There is a lack of specific research into cancers affecting children and young adults. The public perception – until your own child is diagnosed, and then you discover the truth – is that all cancers are alike, and childhood cancer is the same as adult cancer, you just get it younger, when, people presume, you are fitter, healthier overall, and more likely to sail through the treatment.
The treatment, they reason, can’t be that bad – children are little, right? They won’t need so much chemo as an adult, so it’s less of a big deal..right?
Wrong!! A child is still growing and developing, which means that their cancer grows faster and more aggressively than adult cancers. Whereas an adult begins treatment at 20% of the safe maximum dose for their bmi, a child’s treatment must begin at 80% of the maximum safe dose for their bmi. This means that the child is sicker, sooner, and for longer, than an adult with a broadly similar cancer – and that’s another thing: Cancers affecting children are not the same as adult cancers, and where there is an adult "equivalent" disease, the drugs which treat the adult really quite well often works less well, or not at all, in the treatment of a child – and at 80% of the maximum safe dose, there is little scope for adjustment or error.
Some drugs developed for one type of cancer in adults have eventually been found to be effective in the treatment of entirely different cancers in children, but we don’t know how many could be used to treat our kids, because the drug companies don’t need to test a drug for it’s potential to treat a cancer other than the one is was specifically developed for.
All drugs developed for adult cancers are supposed to be trialled for use in kids and teens too, but since there is often little or no correlation between adult and childhood cancers, the drug companies are able to make use of a loophole that allows them to miss out this vital step and simply take the drug to market. In the last 30 years, huge strides have been made in the treatment of adult cancers, while many kids cancers are still being treated with drugs developed in the 60’s, 70’s and 80’s..the imbalance is pretty horrific.
Of the various campaigns by CRUK, children appear in about 40% of the images and stories, yet they receive less than 2% of the funds raised. CRUK tell us that this is because there are simply not the research projects to fund (and fair play to them, they do fund the research labs and facilities), but they also tell us that childhood cancer is rare, that it is somehow connected to lifestyle choices (it isn’t), and that 80% of children survive, so the incentive to improve things in this area is simply not there, creating a research backwater, and a career vacuum.
This figure does not mean that 80% of children survive no matter what cancer they are diagnosed with – it means that out of the top handful of easiest to treat cancers, survival rates have improved, but out of over 200 cancers which are specific to children, the few which happen to respond well to drugs developed for adult cancers don’t make the rest any less of a threat, and in some cases, a death sentence.
Just to be clear, 10 – 11 children are diagnosed with a form of cancer every day in the UK. If 80% survive (and by "survive" they only mean "live for 5 years after initial treatment protocols end", with whatever damage or disability they are left with..and if they die in the 6th year after EOT, they are still counted as a survivor!) then that means that at least 2 children die of cancer every single day in the UK. My child is in a jar on the mantelpiece, after 7 years of treatment which ultimately killed him. Don’t just stand up to cancer – stand up to the research bodies who use our children shamelessly to raise funds for research which does not benefit them.
**Introducing our Charity of the Year: Henry Dancer Days
Thanks to all 118 people for coming to see our first showing of Kingsman 2: The Golden Circle and donating to charity last night! (Big shout-out to whoever donated £5!).
Jane Nattrass is the head of Henry Dancer Days and the mother of Henry whom she lost to osteosarcoma when he was just 12. Jane will be popping down again tonight to collect for children and young people suffering from primary bone cancer.