This will be PAC2's 7th September, aka National Childhood Cancer Awareness Month. Starting virtually unaware, except for the worst fact about childhood cancer, over the years we've learned that the research funding for all cancers is not the same, and that funding for childhood cancer research is severely lacking, especially from some organizations not directly focused on kids. We've learned that kids need their own specialized research because they are not just little adults. We've learned that awareness can lead to funding which leads to research which leads to better treatments. We've learned that industry funds 60% of all adult cancer research but virtually no childhood cancer research (it's 'rare' and non-profitable). Federal funding makes up the majority of funding for childhood cancer research, yet it barely cracks the $200 million level from a government with a total budget of $3.6 trillion and makes up less than 4% of NCI's budget (adults get 96%).
We've learned that if we look at childhood cancer in terms of young lives cut short, or person-life-years lost; overall, curing childhood cancer would be about the same as curing breast cancer. Incredibly, seemingly without notice or concern from media or the NCI, we've learned that the incidence of childhood cancer has increased over those seven years, increasing from 1 in 330 to 1 in 285 kids under 20. We've learned that the 80% 'cure' rate is for five years and only means means a 3 year old will live to be 8....not necessarily 80 or even 30. We've learned that the long-term survival rate is less than 80%, maybe as low as 66% on average, and of course for some kid's cancers it's virtually 0%. We've learned that 20% of the five-year survivors subsequently die from their cancer, a secondary cancer, or long-term effects of the "cure" or the treatment over the next 25 years, the gross term excess mortality. We've learned that 98% of the five-year survivors face long-term health effects from the treatment, with about half suffering severe or moderate life-long effects.
We've learned that so much more needs to be done.
But, we've also learned (early on!) that the childhood cancer community is made up of incredible people who bring diverse backgrounds and talents to the fight. We've learned that these people want to collaborate to cure childhood cancer faster; and we already knew that that together we could change the world.
We've learned all these numbers and facts; but it's so much less complex when your child has cancer or if you've lost a child. It's really very simple: We as a country, as adults, are still not doing the best we can to save our own sons and daughters from the disease that kills more kids than all others combined. We need to challenge our leaders to do better, we are way past the awareness stage.....
So, if there is any way we can get a word in edgewise during the upcoming Congressional Childhood Cancer Caucus featuring Dr. Francis Collins, Director of NIH, on behalf of the 83 million kids under 20 we promise to issue the #ChildhoodCancerChallenge.
Please consider joining us in DC this September:
Let us know your thoughts at info@PeopleAgainstChildhoodCancer.org.
Have you signed the petition?