Lately the whole world seems to live like childhood cancer families have lived from a long time. The Covid-19 pandemic allows us all to have an idea about what a child or young person with cancer has to go through: social distance, constantly washing our hands, wearing a mask, not knowing what will happen in the future… yet we are calling the Covid-19 pandemic an emergency – and the word “pandemic” is pretty strong and scary itself – but we are still acting as if the childhood cancer pandemic/emergency has not been here from long before.
As someone who has set up her own charity in 2014 to support young people with cancer (and no, I did not have any personal experience of childhood cancer) I urge for the world to give childhood cancer fighters and survivors the support they deserve. For quite a long time after setting up my charity I had no idea that childhood cancer is severly underfunded. This is because childhood cancer is considered “rare” and so pharmaceutical companies prefer to invest in tumours that affect a higher number of people, meaning the adults, because they will make more money out of it. A lot of childhood cancer charities work really hard to raise money to fund childhood cancer research and many families and young people with cancer raise funds to improve treatments but this should not weight only on charities’ shoulders – and, above all, no childhood cancer family should have to deal with having to raise a lot of money for better treatments.
At the moment, most of the drugs available for children, teenagers and young adults with cancer are pretty old, harsh and made for the adults. This means that, even in the case in which these drugs are able to save their lives, a lot of children and young people have short or long term side effects such as infertility, secondary tumours, cognitive problems etc caused by the drugs themselves.
Around one child in 500 will develop some form of cancer by the age of 14 years. In the UK, cancer is the most common cause of death in children aged 1-14 years, accounting for around one-fifth of deaths in this age group.
When we talk about “childhood cancer” we often think of it as one illness when in fact we are talking about dozens of types of cancer and countless subtypes. Prognosis can vary a lot from one cancer to the other; there are some types of cancer, like ALL (acute lymphoblastic leukemia), which have very good survival rates and other types of cancer, which affect less kids/young people, such as bone tumours or brain tumous, which have pretty low survival rates. I was particularly shocked to know that there is a type of brain tumour which affects children almost exclusively, called DIPG (diffuse intrinsic pontine glioma), which is terminal upon diagnosis and the children usually die 9-12 months after diagnosis. DIPG is considered “rare” so there is a lack of money invested in research and a child who gets diagnosed with DIPG today has to go through the same journey that a child diagnosed 50 years ago had to go through.
Now the world’s eyes are focused on the Covid-10 because it scares us all, because it can touches us all, but is not the same for childhood cancer? Childhood cancer can affect any family yet we often act as this does not exist. We often think about childhood cancer as if it has little to do with us. But it does. It does because all the childhood cancer families once were “regular families”. It does because we all should care about our kids and young people, and we should fight with them as well as on their behalf. It does because this is a clear violation of one of the most basic human rights – the right to health – right here in our rich and develped Countries.
Let’s remember that, when the Covid-19 situation will be better or will be gone for good, there will still be childhood cancer families struggling to make ends meet, childhood cancer fighters dealing with old and hash treatments who wear their masks, avoid social contacts wondering when they will be able to go back to school or see their friends again, often fighting without the proper weapons to do so.
Childhood cancer is a pandemic, an emergency which has always been here for us to see and to deal with. Now that we all have somehow experienced, altough in a minor way, what these families go through for many months or even years let’s make an effort to don’t forget them and to get informed and do our part, big or small, to make sure childhood cancer research gets the funding it deserves and these families and young people will get what we all deserve the moment we were born: the chance to not only survive, but to thrive in life.
An international online photograph exhibition my charity is running :