September – #ChildhoodCancerChallenge

Moon_edited-1This 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 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 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 U.S. Capitol Building, Washington D.C.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.

10565029_10152297179327314_5071256697064449923_n

Please consider joining us in DC this September:
On September 19 (9-10:30 am), the 5th Annual Congressional Childhood Cancer Summit will be held. Rep. Michael McCaul and Rep. Chris Van Hollen, the co-chairs of the Congressional Childhood Cancer Caucus, are pleased to host Dr. Francis Collins, the Director of the National Institutes of Health (NIH), who will deliver the keynote speech. We hope you will join us for this exceptional event. Please feel free to pass this invitation along to others who may be interested. Visit the Congressional Childhood Cancer Caucus at http://childhoodcancer-mccaul.house.gov.

The CureFest for Childhood Cancer Walk will be held in Washington, DC on September 21 from 9:00 a.m. – 1:30 p.m. The walk is an excellent opportunity for the childhood cancer community and the general public to stand together as one voice against childhood cancer (united!). The event includes an organized walk from the U.S. Capitol to the Washington Monument and back. Over 60 organizations have registered and hundreds of families will be in attendance. Kick off CureFest Weekend with the CureFest Welcome Event on September 20th. This family-friendly gathering is designed to welcome you to Washington, DC. The event will feature a short speaking program, live music and activities for the children. At the end of the event we will travel as a group to the White House for the “A Night of Golden Lights” candlelight vigil and rally.

Let us know your thoughts at info@PeopleAgainstChildhoodCancer.org.

Thanks, PAC2

Author: Bob Piniewski

Related Articles:

SeptinWash_edited-1

A complete schedule of childhood cancer events taking place during September.

 

bounceballauthor

This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s