Is Childhood Cancer Rare?

rare

Generally speaking, when people talk about cancers, they like to quote the numbers.  Sadly, some point to the 36 kids a day diagnosed and 2,400 deaths per year and say they are small numbers compared to the adults diagnosed.  Some people even point to the overall “cure” rate of 80% and say that is relatively good compared to adults.  Of course, no one ever mentions that 75% of the kids that are considered “cured” have long term health effects.  We, in the childhood cancer community rail against  these attitudes and feel childhood cancer is NOT rare and the numbers are extremely high!

Why is there such a divide in the perception of cancer when it comes to the welfare of our children, adolescents and young adults?  To answer that question, let’s step back for a moment and take a  critical look at something that recently occurred  within our own childhood cancer community.

The childhood cancer community, has noted on several occasions that we are not represented very well on the advisory board of the National Cancer Institute. We do not have a pediatric cancer specialist on the board.  All of us agree that we need to have this most critical  representation on one of the most important decision making bodies within NCI.  The President of the United States, on advisement, makes all the appointments to the Advisory Board of the National Cancer Institute.  Recently, there was an opportunity for our community to show our support for the position by signing a petition on the White House website.  Several childhood cancer organizations urged all their members to sign and encouraged them to also get friends and family to help get the word out. Facebook lit up with requests to sign the petition for a short period of time. The petition rules required a minimum of 25,000 signatures before the request could be reviewed for any consideration.

Unfortunately, our entire community, as big as it is,  could only muster  a tenth of the required signatures. The lack of action on our part made it appear to others that the position was not important to us or that possibly  childhood cancer is indeed rare and therefore our community is so small that we could not come up with  the required 25,000* signatures.  That old adage, “Perception is reality,”  hits home.  Our actions, as a community, need to change perceptions, not reinforce them.

We need to find better ways in which we can come together and speak with one voice on important initiatives  that impact our children, adolescents, and young adults who are fighting cancer.

Author: Joe Baber

*The White House has since increased the required number of signatures to 100,000 in order to get them to address a petition. There recently was a petition available  for people to sign to increase funding. Unfortunately, it looks like we, again, gave  the world the impression that childhood cancer is rare because it only got about  2,000 signatures in 30 days.  What are we supposed to do, stop trying?  Well, don’t tell the man who started this petition!   He started another one! Like the first one, it did not pass.  Look out, I am sure he will have another one soon.  Thank goodness some people will not give up!  We need more like him. If you want to go to the original story, you can check it out here,  “I’ll take second,”

bounceballauthor

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

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