The childhood cancer community on social media started a #MoreThan4 campaign 5 days ago. As things stand, the National Cancer Institute only gives less than 4% to research and try to cure all 12 types and all 200 subtypes of childhood cancer. It’s not enough. There is no way it could possibly be enough. We have to try to change things. We want better for our kids.
We are posting pictures (yes, most of them are selfies) with a sign saying 4% is not enough for childhood cancer. Last week, we got wonderful news from St. Baldrick’s when a drug that will be used to treat high risk neuroblastoma has been approved by the FDA, the first drug of its kind, one of the very few drugs that have been approved by the FDA for pediatric cancer in the last two decades. We’ve had to push so hard for this.
As TheTruth365 instructed, I took my selfie, posted it on Facebook, Twitter, and Instagram with the hashtag #MoreThan4. On my Pediatric Cancer Awareness page on Facebook, I invited people to message their pictures and I posted them as I received them, again using the hashtag. I loved seeing all of them, and loved even more that my newsfeed was full of them. By the end of Monday, we had it trending!
I was a little discouraged and a lot angry yesterday when I read on TheTruth365 page yesterday that the people who work at the National Cancer Institute were annoyed by our campaign, and that they were steadfast in their belief that they were right and we were wrong. The last straw, for me, was getting a form letter via email from them. It was a “nice” letter – they said they realize that far too many children suffer from cancer and that they are fighting this alongside with us. The letter also said they realize that children are not just small adults, and needed new approaches and tailored treatment plans that would allow them to lead long and healthy lives. But most discouragingly of all, the letter did not mention whether or not they were willing to look at funding, let alone raising it. So this is my response to the director of Advocacy Relations, Kelley Landy:
Dear Ms. Landy,
Childhood cancer is the number one cause of death by disease in kids. It isn’t going to get better unless you raise the amount that is allocated to pediatric cancer research. 4% barely makes a dent! There are 12 different types with 200 subtypes! The citizens of the United States of America are taxpayers – we DO have a right in voicing our opinion in how the money we give you is spent.
Did you know that 2 out of every 3 children who survive their cancer suffer from long term side effects? You say you know kids are not just small adults. Well, then, why are they being treated with made-for-adult drugs? Why were there only 3 pediatric cancer drugs approved by the FDA in 20 years? TWENTY YEARS! Do you know how many children we’ve lost to cancer in those 20 years? 51,100! That’s right – fifty one thousand, one hundred kids gone. There goes the hope for the future. If that doesn’t break open your heart to cancer kids, I don’t know what will. When kids die from cancer, they are losing approximately 71 years of life. They will never graduate high school, never get married, never have kids, never hold their grand babies who would have been if they had survived their childhood.
You might ask why I am so passionate about this. I am a childhood cancer survivor (diagnosed with stage 4 neuroblastoma at age 15 and a half months) with long term side effects from treatment. I came down with viral encephalitis before my treatment protocol was even over and couldn’t fight it because my immune system was wiped out. The infection damaged my brain stem. I am physically disabled, with hearing loss and a speech impairment, and with scoliosis from the radiation I received. When I was 14 I had surgery to try to correct a 69 degree curve to my spine. I’ve had 4 more surgeries on my back as well.
I survived my childhood. Barely. But the children I speak for on a daily basis as an advocate? A lot of them won’t. Why? Because the NCI thinks 4% is enough to save them. But it’s not. I wish it was. But it’s not. Parents have to worry about fundraising on top of their child’s health, or rather the lack of their health. That isn’t right. It isn’t fair to put this on them when you have everything at your disposal to give more. You continue to research prostate cancer when it has a 98% survival rate. And maybe it’s true that more men get prostate cancer than kids get childhood cancer (12 separate diseases! With 200 subtypes!), but what about the little boys who never get to grow up? What about the little girls who never get to grow breasts because cancer took their lives before they grew old enough to have them?
We advocates are survivors, parents, siblings, extended family, friends, and mostly we are strangers. We have foundations aplenty, but what we don’t have is your support and your resources and your minds. How would you feel if we lumped adult cancers into one category and gave them less than 4%? We are educating the country, the world even, and mark my words, we will be heard. It might not be until the next generation grows up and takes over the NCI, but we will be heard. Our grieving will not stop – nothing will ever replace the children we have lost – but our voices will be heard. Someday. I hope for our sake that it is sooner rather than later.
A childhood cancer survivor and advocate