Before my child had cancer, I thought it was something this country cared about. How many times do you see St. Jude specials on TV, or hear of companies donating to a children's cancer cause, or see a local fundraiser. It seems common. I thought it was something people supported and that was well-funded. After all, who can look at the faces of innocent young children and here their 'war stories' against the cancer beast and not be moved? We are the wealthiest, most technologically advanced nation in the world and these are our children right?
But I was wrong. Celebrities and adults drive support, funding, and allocation and it the vast majority goes to adult cancers- breast, prostate, colon, and lung. Children do not have a voice in this process and their families are so overwhelmed by the process. Who is speaking up for children with cancer?
I actually cringe slightly at October being Breast Cancer Awareness month. Breast cancer gets the majority of all cancer funding and continues to get even more. Now please don't hear me say I don't think these are worthy causes. I DO. But the scales are tipped way too far. Of all the funding for cancer research, pediatric cancer only gets 3% of the total. When you put it all in perspective, children's cancers are getting only pennies.
How many people even know September is Childhood Cancer Awareness Month? How many gold ribbons do you see in proportion to the pink ones? Some of cancer research is broad-reaching and reciprocal among adults and children, but very little. Any medical professional will tell you children are not small adults. Not only that, many of the cancers are unique to children.
A mom of a rhabdoid AT/RT angel baby (Vivienne) summed up some of her frustration...
"This inequality has a direct effect on the treatment of children diagnosed with cancer. New drugs are developed for adult cancers and only later tested to see if they happen to work for childhood cancers too. It is an extremely rare occurrence when a drug is researched, designed and implemented to treat pediatric cancer as its primary goal. By the numbers, the statistics are chilling:
"In fact, of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period."Source: Molecular Cancer Therapeutics, August 2006.15 new cancer drugs labeled and approved for children over 55 years, compared to 120 for adults.
We should be ashamed of ourselves."
Not only are children's and adult's cancers completely different, so are the expectations. A child facing cancer has their entire life ahead of them. They have not experienced childhood, finished school, gotten married, found a job, had a family, and lived their life. The effects of these life saving treatments can be devastating- secondary cancers, organ damage and failure, sterility, learning disabilities, nerve damage, etc. They have so much more at stake. They want to live long, productive, healthy lives with careers and families. They want their bodies to work for decades.
There are some amazing possibilities on the horizon. The newest chemotherapies are targeted and specialized to accomplish specific tasks, as opposed to traditional methods that kill everything in their path. It's the difference between a guided missile and carpet bombing. This is essential when dealing with developing and growing children. The goal is to rid their bodies of cancer while preserving the health of their hearts, brains, bones, lungs, and other organs. But the money for the research just isn't there.
There are a handful of diseases where the only known treatment options actually cause life threatening disease themselves. Cancer and autoimmune disease are at the top of this list and the treatments are brutal. This is such a horrible place to be as a parent to have to sign off and okay these poisons to help your child. One of our dearest family friends is a teenager battling severe ulcerative colitis. The immunosuppressants and autimmune drugs he takes to control his condition (and avoid a permanent colostomy), also can cause lymphoma. He's in testing now. This stinks.
There have to be better options out there for these kids. But until the researchers get the funding we may never know.
Childhood cancer is different not just from a health perspective. Did you know health insurance has a lifetime cap of $1million at which point you become uninsurable? What happens if you hit yours before you even reach adulthood? Reaching this cap is nearly impossible to do and most people don't ever have to worry about this unless you fall into two categories... you were born very prematurely or are diagnosed with childhood cancer.
These kids face such an uphill battle.
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