Childhood Cancer Awareness; why won’t they “go GOLD”?

4percentDelaney

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In Loving Memory of Evylah d. 10.10.15

Evylah

Sweet Evylah died of DIPG yesterday; another family decimated with grief, another beautiful light now in the sky.

September was Childhood Cancer Awareness Month, but for some reason the President refused to flood-light the White House gold, even for a day, as it goes pink for breast cancer, rainbow for same-sex marriage, and the list goes on.  To add insult to injury, on September 19, over 700 people, many young children with cancer undergoing treatment from all over the world, gathered at LaFayette Park for their scheduled and permitted White House Vigil for Childhood Cancer Awareness only to be kicked out of the Park by the Secret Service.  The full article can be found at the Washington Post.CureFest activities continued, however, on Sunday for their annual walk and Festival on the National Mall where many foundations from around the world exhibited and shared stories and solidarity in their efforts to raise awareness for the inequities in research funding for our children with cancer.  Only 4% of our National Cancer Institute’s annual budget for cancer research targets pediatric cancer as a whole.

01f6d7d5059ef8e377ef1774ac2d0c7a31ea747a30Many of us came to Washington DC for CureFest and the Vigil to find out why research for the leading cause of death in children after accidents and injuries is so underfunded.  No one in the Administration really wants to talk about it.  Our children are not coming first, but dead-last.  When presented with the attitude at the Vigil, it seemed to be a confirming indication of the reality all of us parents who lose a child to cancer experience in some way:  to the “system” our child is just a number.  Corporate profits on pharmaceutical investment are the number one priority.  People come after profits.  This is the reality we experience, in the case of DIPG, when we ask why nothing has been done in decades for a pediatric cancer with a 0% survival rate.  The reality for us, intended or not, is that our children are left to die.

I had the privilege of attending the Summit for the Congressional Caucus for Childhood Cancer that week, and the White House Briefing for Childhood Cancer Awareness Month.  I can tell you one thing for certain:  last year 2014, there was no discussion of the 4%, or the inequities in research funding for our children, with Dr. Varmus, then the Director of the NCI, stating flat-out that it simply would not be discussed at that time.  This year, there was more of a dialogue, and acknowledgement–but no answers.  There is still no transparency, that I could find, to the decision-making process concerning the prioritization of research.  This tells me that, until we are able to put in legislation that our children dying of cancer are a priority, it won’t happen.  We the People must demand it.

4th graders waiting for hours to perform...so they sang for us on the street.

4th graders waiting for hours to perform…so they sang for us on the street.

The fact that the President sent no word, no apology to CureFest or the Childhood Cancer Community concerning the incident September 19 isn’t just deplorable–personally I think he should have gotten all the kids ice-cream–it’s just one more example of how our kids with cancer are being ignored by the Administration.  The White House Representative who invited us to the Briefing sent an apology to all those who attended that particular event, a handful compared to all those children who had gathered with their parents.  Thank goodness she did–and of course no one wanted it to happen, but for Heaven’s sake!  The President or Mrs. Obama should have said something, and one would think they would, but the experience resonates with their not turning the White House gold–as they turn it pink for big money in breast cancer drug development.  Even fracking vehicles and equipment, big oil of course, turn pink for breast cancer.

Slide2I call DIPG the Great Embarrassment because it’s had a 0% survival rate for so long, with so little attention despite the death sentence every year for some 300 children in our country, and because it exemplifies so well the plight of all childhood cancer– they are all marginalized as rare because they may not be–in the short term!–as profitable to invest in.  Forget the fact that we could cure all cancers, or at least bump up our understanding of biology and medicine up 5 notches, create new industry and jobs; no.  The next round of quarterly reports is the confirmed priority.

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