Why we all should care about our (underfunded) children and young people with cancer
When I set up my charity to support teenagers and young adults with cancer I was affected by their resiliency and I wanted to do something to help them. Little did I know that spending time with lots of teenagers with cancer and their families would have changed my own life and would have lead me to become an advocate for the cause.
For a start, I knew very little about the reality of childhood cancer. I knew what I was told through major TV ads and campaigns, usually showing pretty and happy bald kids having fun in a summer camp. But that’s just one side of the story.
When we say “childhood cancer” we often think about one disease when in fact we’re talking about hundreds of different diseases with dozens of subtypes; prognosis and treatment plans can be very different from one cancer to another. There are some types of cancer like ALL (acute lymphoblastic leukemia) with a 90% survival rate and other types of cancer, like sarcomas, with much lower survival rates then I know of young people who died of ALL and others who are sarcomas’ survivors.
Back then, I didn’t know all this. I thought the childhood cancer world was much simpler than it actually is. I learned that to actually get the right diagnosis can often be tricky and take quite a lot of time, especially for those cancers who are considered “rare”, and this is because most GPs don’t know childhood and teenage cancer symptoms and often young people and their families don’t think about something as serious as cancer and they may postpone the moment to book a doctor’s appointment; I learned the effects a cancer diagnosis has not only on the child or young person but on his/her family, friends and community and above all I learned that childhood cancer is severly underfunded (and, yet again, we’re talking about childhood cancer as a whole).
In the US, only 4% of federal government cancer research funding goes to study pediatric cancer. In Europe, 6.000 children and young people die of cancer every year yet in the last 9 years only two new cancer drugs for the pediatric patients have been developed. In 2016 there were over 1.000 new drugs being devoloped for adults with cancer.
When I learned about this, I couldn’t believe it. We always say: “Kids are our future”. And they are. Those kids and teenagers lying in a hospital bed having chemo have dreams and goals like every other young person. They are our future doctors, teachers, Presidents, humanitarians but they often haven’t got the chance to grow up and try to realize their dreams because we are failing them. Yes, we as a society are failing them. And it doesn’t matter if we’re living in the USA or in Europe, I’m talking about us as human beings, as adults who are supposed to protect them and to put their survival and safety first, instead we are telling them they are not worth our money and our time. We often prefer to look away from this issue because we don’t like to think that something as bad as a childhood cancer diagnosis may happen to our family too, we may want to think that those kids with cancer need our pity and compassion but that’s not true because I’ve got the honor to get to know many of them and these youngsters are fierless lions who have to fight a battle they didn’t choose to fight. They don’t need our pity or compassion, they need our attention, they need us to stand up for them.
Before I opened my charity in 2014, I didn’t know much about childhood cancer and I didn’t care about it. It was something that happened to other people, the whole hospital world seemed so distant and unreal and so I was 30 years old and I didn’t know how we are failing these kids. You are probably thinking that this failure means kids and teens are dying because of the lack of funds for research and that’s true, that’s the saddest part, but ther’s another part that’s equally sad: many of these kids and young people are forced to go through many years, sometimes a whole lifetime, of old, harsh and painful treatments. Their families lives are shattered and they all live in a daily hell for years. I know a mother whose 13 years old daughter has passed aways because of osteosarcoma (bone cancer) and she told me her daughter’s treatments were 30 years old. Do we think this is right? Is this what our children, nieces, newphes and grand-children deserve? The answer should be an outraged “no” yet we are letting this happen so we’re implicitly saying: “Yes, this is acceptable to us”.
It’s acceptable to us that these kids are dying because we don’t care enough to fight for them and fund research; it’s acceptable that they have to go through harsh and often old treatment plans that most of the times leave them with short or long term side effects such as infertility, blindness, cognitive problems and so on. They need and deserve not only cures (yes, cures, and not “a cure” because there are different types of childhood cancer) but also kinder and more modern treatment plans especially developed for kids, teenagers and young people because they are not “small adults”. As if this is not enough, most kids and young people suffer because they have their childhood taken away. Their friends go to school, have fun, build their own futures while they are stuck in a hospital bed with radiation burns, nausea, barely able to keep their heads up, often angry and disappointed because they know they should be out there playing, laughing and living life.
I think and hope that, if people knew about the true reality of childhood and teenage cancer, they would be compelled to act. The fact is that people need a deeper knowledge of the topic and I think what would help people most is, like it happened to me, to get in touch with at least a family who has a child battling cancer to actually feel this cause like when you sit with a 22 years old young woman under a starred summer sky, she just told you her cancer is back and she looks you in the eyes and say: “I don’t want to die”. This happened to me, and I got angry; I got angry because I’m not better than her, so why did she get this path in life and I’m here, perfectly healthy, with my whole life ahead of me? I think we’ll never get the answer to this kind of questions but what got me really upset was knowing that, while we all seem to care so much about looking perfect and being popular or buying that new mobile phone who costs hundreds of dollars, pounds or Euros or while we think about what we’ll do tomorrow, next month or even next year because for a chance of luck we are able to plan a future, we fail this young woman and thousands like her.
In these last five years I met so many teenagers and young adults who passed away because of cancer. And if it’s true that when you get diagnosed with cancer you may wonder “Why me?” or “Why my child?”, you may get angry with God, no, I think that when we’re looking for a culprit we should look no further than ourselves. We’re guilty for each of these deaths. We’re guilty for all the kids, teens and young people who are spending summer or the holiday season in a hospital bed, we are guilty for the parents who are fighting by their side, for those grieving the loss a child, for the siblings; we are guilty for every life lost being it to death or to a harsh and long journey. We are guilty until we decide that our children and young people are our priority, we’re guilty until we decide to act and if the first part is being aware of the issue, the second part is to look further into the cause and learn some more and the third part is to talk about it. People should stop turning a blind eye to the cause, or thinking childhood cancer is something that “happens only to others”. We should care for ALL our children and think about the has our own.
We can go on and pretend this is not happening right now, in 2019, in our civilized nations, but doing so we’ll keep failing them. I personally think we have waited enough, we have spent enough money on unimportant things. It’s time to stand together for our children and young people.
They don’t deserve to be failed.
By Maricla Pannocchia
I’m the founder and chairman of Italy based charity Adolescenti e cancro (Teens and Cancer). I’m also a published author, a director, script writer and actress.