Frustration

I heard from the state of Virginia’s Office of the Governor a couple days ago in response to my letter about childhood cancer.  I was excited at first, because of how it began:

Governor McDonnell asked me to respond on his behalf to your letter regarding childhood cancer.  Thank you for bringing this important issue to our attention.  I am happy to learn you survived pediatric cancer, albeit with some disabilities, and that you have become an advocate for children facing these cancers.  Each year, over 300 children in the Commonwealth are diagnosed with some form of cancer.  

I want to assure you that we do care about all our young citizens and their families facing a cancer diagnosis.  In September 2011, Governor McDonnell issued a proclamation for Childhood Cancer Awareness Month to help raise awareness in our state.  This proclamation can be viewed here.  In addition, Virginia does offer resources to assist pediatric cancer patients and their families.

It goes on for two pages, outlining what Virginia does for its sick children.  The state department of health has a “Care Connection Network” for children with “special” health care needs.  The letter also states that the majority of Virginian children do have health insurance (nowhere in my letter to Robert McDonnell did I even mention the word insurance, but…  good to know).  They have a statewide cancer registry:

Hospitals, clinics, laboratories, and physicians are required to report cancers to the registry, which analyzes data on cancers occurring in all age groups, including children.  This data allows public health officials to monitor occurrence and to identify areas to target for cancer prevention and control efforts.  

The secretary (the person who wrote the letter) acknowledges  that

Cancers children develop differ substantially from the adult pattern.  Thus, leukemias, brain and nervous system cancers, and lymphomas comprise 60% of childhood cancers, but comprise only 8.3% of adult cancers.  The difference between the two age groups indicates that public health prevention and control policies and activities should be tailored with recognition of this fact.  Surgery (30%), chemotherapy (40%), and radiation therapy (14%) are the most common forms of treatment of childhood cancers.  Hormone therapy (6.7%) is also employed.  The cancer registry does not collect information about unconventional cancer treatments, so that the extent of their use cannot be measured.

Of course the cancer registry does not collect information about unconventional cancer treatments.  Most of these “unconventional” ways have better success rates than the conventional ways, but shhhh….  They don’t want us to know that.

Last September,  hardly anybody outside of the childhood cancer community even knew it was National Childhood Cancer Awareness Month.  Pink ribbons overshadowed the gold.  Why?  OCTOBER is Breast Cancer Awareness Month, not September.  Perhaps this was to be expected during the first couple National Childhood Cancer Awareness Months, but this really irritated me.  And I am all for ANY cancer or health problem awareness, but…  I think of the little girls who will never grow breasts because childhood cancer killed them.  And that makes me mad.  And it is no surprise to me that the American Cancer Society has something to do with it.  Of course.  Of course.  Curesearch National Childhood Cancer Foundation helped establish September as National Childhood Cancer Awareness Month in 2009, while October was established as National Breast Cancer Awareness Month back in the 1980s.

So, just saying September is National Childhood Cancer Awareness Month is not enough.  I need to see it.  We all need to see it.  The children need to see it.  They need to know that we care, and that we are working to get them more research funding and better treatment protocols.  Because chemotherapy is basically poison, don’t you know?  There is no one chemotherapy made specifically with children in mind.  They all get adult drugs in smaller portions, and sometimes, as it was in my case, there are serious side effects.  When will enough be enough?  When will we finally get it right?

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