Sunday, September 1, 2013

What will you do?

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"Imagine this headline: "Seven children were mercilessly killed today as their parents watched in horror." Or, imagine if a classroom full of 36 kids was taken hostage today by a known killer. What outrage would this cause? Would flags be lowered to half staff to pay tribute to the children? Would the president preempt your favorite television program to address a grieving and outraged nation? How many newspapers across the country would lead off the front page with this headline? What would happen if this story repeated itself seven days a week, 365 days a year? Just think about that for one minute.
Seems like a far-fetched story. Yet, it is not fiction. Each and every day in this country at least seven children are mercilessly killed by a murderer known as childhood cancer. "  ~Jonathan Agin, Huff Post Impact
We all know that the pink ribbon symbolizes breast cancer awareness.  That is so good!  My hope would be that everyone would also know what the gold ribbon stands for.  I think it's easy to think that childhood cancer is super rare.  I used to think that way.  But it's not super rare. We don't need a ton of research to realize this, we just need to think.

I'm sure you know of at least one other kid other than Esther.  In our spheres of community, Thomas, from our homeschool group and Ally, from our church were in active treatment when Esther was diagnosed.  Before that, another girl from our church had recently had her five year from treatment clean scans!  That's three...easy.  If I really thought, I'm sure I could think of more...in your neighborhood or kids' school, in your church or someone from your hometown.

Now, there are TONS of great organizations for kids with cancer.  For today I want to focus on research.  There are multiple facets of need and that is good.

As I've learned more about the funding for research for kids with cancer, it's been so sad.  On a federal level, only 4% of the National Cancer Research budget goes to kids.  This isn't surprising, I don't really observe our government making many choices that truly benefit children. .

In adult research...which is good and needed!  I don't want to say adult research shouldn't be funded any less.  Back to adult research.  Over 60% of adult research comes from pharmaceutical companies...because they will see a return on that investment.  I get that, it's business.  However, I'd love to see pharmaceutical companies in it not just to make money but to primarily make medicine that help people....pediatric drugs aren't profitable.

Research has grown significantly in the last 50 years.  However, the FDA has only approved two new drugs for kids with cancer in the last 20 years!!!!  There hasn't been enough research.  This lack of research doesn't cure enough kids and leaves the ones that survive with long term side effects that are often severe.  "By the time they're 45, more than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions." From the St. Baldricks website.

What about private organizations?
Most give very little to kids.  For example, the American Cancer Society only gives 1% of all donations to kids.  That $0.01 of each dollar.  Kids aren't necessarily their target population.  That's fine because they are meeting needs in other meaningful ways. However, it's easy to think that there's lots of resources.  One thing that makes me very, very sad is that many private organizations use pictures of bald kids to fund raise when little of that money actually goes to kids with bald heads.  This is just plain wrong; furthermore, it leads us to believe the need is being covered.

September is Childhood Cancer Awareness Month.  What will you do?  Do you have an idea--share it in a comment!  Here's a few things to get you started...






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