Ask anyone (well maybe not a pediatric oncologist) how many kids get cancer each year. You’ll be a hit at parties, I promise. But, seriously, go ahead. Do it. How many children are diagnosed annually with a primary malignancy?
Having worked in cancer advocacy for years, I’ve known the reality but wanted to more clearly wrap my head around the perception. Given the endless commercials, marketing campaigns, hashtags, GoFundMe pages and wish-granting out there, one might think that millions of children get and die from cancer every year.
But this is not even close to being true.
Children get cancer — and it’s horrible — but, contrary to perception, demystifying the actual numbers is critical to helping them live better lives.
I am a pediatric cancer survivor. If you’ve read my saga, you know I speak with emphatic honesty about the reality of what it means to survive with dignity. Life is about chasing quality first, not quantity. You may also know that I lost my brother-in-law to cancer when he was 19 years old and have shared the pain of that loss with my wife and in-laws. As the CEO of Stupid Cancer, the nation’s dominant youth and young adult cancer advocacy nonprofit, my career lives and breathes tragedy and miracles every day.
What I have to say is a trigger for many but a necessary reality check that is just not being discussed.
The perception that millions of kids get and die from cancer each year needs to change immediately. Not just because it is misleading and factually incorrect, but it does an egregious disservice to the decades-long progress that has yielded insanely better outcomes. Fewer kids definitely die from cancer today than ever before. In fact, we are incredibly good at curing childhood cancer.
For 2016, the American Cancer Society projects there will be 1.7 million new cancer diagnoses in the U.S. Of these, approximately 10 thousand (0.6 percent) will be childhood and roughly 72 thousand (4.2 percent) will be AYA. These 82 thousand new cases are just 4.8 percent of all new cancer diagnoses each year. (Note: These stats do not take into consideration relapse, which is statistically low. Also, secondary cancers are considered a new diagnosis.)
The National Organization for Rare Diseases classifies a ” rare disease” as anything with fewer than 200,000 cases annually. CAYA cancer is extremely rare. The odds of being diagnosed with cancer under age 40 is 0.0004 percent, based on U.S. Census Data citing approximately 170 million CAYA Americans.
For 2016, the National Cancer Institute’s research budget is $5.1 billion. The percentage of that allocated to childhood cancer is roughly 4 percent or $204 million. There is no specific separate budget for AYA cancer.
To paraphrase a comment I read online: “It can be easily argued that 4 percent of spending on 0.6 percent of cancers means that childhood cancer gets a statistically disproportionate share (seven times) of research funds than any other age group or cancer type.” And rightfully so. It’s children. And it has worked. Big time.
So, can we all just start rethinking this from the opposite direction?
Thanks to this prioritization, along with unified academic fronts such as CureSearch and The Children’s Oncology Group, childhood cancer can proudly boast the highest average five-year survival rates of any other age group and the highest rate of five-year survival improvement in all of oncology.
Many argue that 4 percent is not enough. It may not be. No cancer gets what everyone thinks it deserves. But this is a reality we can be proud of.
At the end of the day, fewer children are dying from cancer. Isn’t that a fact worthy of more attention? Isn’t that something worth celebrating? Why is public perception still that every kid dies? Because we are allowing it to be.
As of this writing, there are nearly 400 thousand long-term childhood cancer survivors in the U.S., most of whom are still under age 40. This means that the larger CAYA community of 1 million Americans is more than one-third kids who lived. These are insanely impressive numbers that are definitely hidden in the way this issue is presented to the public.
I am also a realist about the word “cure.” We need to stop using that word. Why? Because it’s meaningless. It’s abstract. It’s user-defined. There is no one cure for cancer. It’s not one disease like polio or diabetes. It is more than 200 different diseases, each of which manifests entirely differently in the human body.
What’s worse, “cure” implies that you’re done. Poof. It’s over. Get on with your life. This is insulting, particularly to the CAYA community who don’t all necessarily spring back into their lives and move on as if nothing happened. I can speak for myself when I say that I may be 20 years disease-free, but I have never felt cured.
“Cancer may leave your body but it never leaves your life,” Lance Armstrong once said.
In 2003, the National Cancer Institute released ” Childhood Cancer Survivorship: Improving Care And Quality Of Life.” It was the first time the concept of quality-of-life was pitted against quality of care. At what cost were we saving these kids’ lives when many of them were dying years later of major health complications simply because they were cured as kids?
Thirteen years later, much has changed and yet nothing has changed. The benefits of pediatric cancer research still end when you’re cured. Why? Because pediatric cancer research has not evolved. It’s stuck in the world of biology, lab coats, beakers, electron microscopes, chemistry and tissue samples. It is hung up on “cure” and not “life.” And “cure” has a consequence that few talk about.
So what happens to all those kids who live? They grow up. Tens of thousands each year. But they grow up different. The consequence of beating cancer as a kid more often than not brings with it a lifetime riddled with health complications. And most people simply do not know or understand this.
We all agree that children have the right to survive with dignity, a high quality-of-life and the opportunity to get busy living and thrive. In reality, ensuring this requires redefining what pediatric cancer research means to the funding priorities of the massive nonprofits in this space.
It is estimated that 60 percent of childhood survivors have compromised immune systems and deal with fertility issues, cognitive deficits, learning disabilities, heart muscle abnormalities, diabetes, FTT (failure to thrive) and a significantly increased risk for secondary cancers. Granted all of these chronic conditions are better than the alternative, but we’ve done so much to save their lives with our traditional research funding … now what?
Pediatric cancer research efforts to date may have cured these kids, but at what cost? What is the responsibility on the part of pediatric cancer research machine — and the corporations that support it — to ensure that the enduring survivorship needs of the kids it cures don’t get ignored?
Do they not owe it to these kids to ensure the continuity of their care and well-being?
Why are these massive funding entities not raising millions to support programs and services for the graduates of childhood cancer?
Dear pediatric cancer research foundation behemoths:
Congratulations. You’ve helped millions of kids not die and graduate to long-term side effects, psychosocial concerns and a host of issues that nobody is there to help them through. People like me have now survived, but won’t you help us live?
You’ve done so much to get us to this point, please don’t forget us because what you helped us survive will affect us for the rest of our lives.
It’s time to start funding the young adult cancer movement.
And please, no more bald kid commercial appeals. Show the world your progress without fear mongering because we are the fruits of your labor, we deserve better and the world does not stop spinning as we struggle to get busy living.
Thank you.
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The End of Pediatric Cancer Research as We Know It originally appeared on usnews.com