This is Michael. Today is CureFest in Washington D.C., an effort by children's cancer advocates to rally and generate attention to the issues we face to stop our children from dying of cancer. Melissa and Ashley are doing great work there and will today cap off the long weekend with a rally and a walk on the National Mall. Every time I think of Washington and the political issues that go on there everyday, my mind keeps coming back to the same thing: children with cancer will die today, and it's because cancer in children is the number one killer of our children by disease. What else needs to be said to any politician, political party or candidate? Shouldn't this be addressed as a priority? Today's efforts by Ashley and Melissa and all those at CureFest will help in that effort.
As usual every year, I received some interesting comments to my post yesterday regarding the role of the pharmaceutical industry in funding research for developing less painful treatments for children with cancer and, ultimately, determining the cause of cancer in kids and bringing it to an end. I am not deterred. I invite all comments, even those that may disagree because civil debate usually spurs action, and in the end, that is a good thing. I would only comment in reply to most of those with two thoughts: one, we are not advocating for government freebies and frankly don't believe in the welfare state; rather, Melissa and I (and I think most parents) are simply stating that IF the government does indeed allocate money for cancer research, be a little (actually, a lot) more considerate of our children. The amount of money that goes to cancers that predominantly strikes adults past the age of 60 compared to that of children as a whole is shocking and embarrassing. Second, I would just ask anyone with debate to consider that the strength and passion of my argument and protest and advocacy for children with cancer is because I am living it every day. I have no political agenda here: I have a child who is fighting to live, not just get well. Consider the source of the information: me. And know that in just a few years, I have witnessed more pain, wicked hell and misery and yes, death, to our children and future generation. And it is wrong. It is unjust. It is, in my opinion, unnecessary. And I will fight for the rest of my life to change it until cancer in children is no more or I am no more.
Childhood cancer Awareness Fact of the Day: It costs an average of $802 million in research and development to bring one drug to market. In a 55 year study of drugs to treat cancer drugs approved by the FDA and brought to market, only 15 out of the total of 120 had pediatric labeling approved. I repeat: Only 3 cancer treatment drugs for kids have been developed and approved for use in the United States in the last TWENTY years. SOURCE: Children's Hospital of Philadelphia (CHOP)
To further make the point, and because today is the CureFest Rally in Washington D.C., I will again tell the story about a gentleman named Jeremiah Steepek. Steepek was to become the new pastor of a church with 10,000 members. On the day he was to be introduced to his new congregation, he didn't bathe and made himself dirty and dressed as a homeless person. He showed up before the service and and walked around outside the church. The members, all anxious and dressed to see their new pastor, all walked past him and some gave him bad looks and otherwise ignored him. He asked some for food and none offered. Three people out of 7000 said hello to him. He tried to go into the church and sit at the front row, but the ushers quickly took him away and made him sit in the rear. Stares and disdainful looks came his way. When he finally was introduced to the congregation and made his way to the front of the church and all saw who it was dressed as the homeless man, almost all felt the shame.
That story makes me think about where research funding for children's cancer is compared to that of other funded cancer efforts. Research and testing and trials for children's cancer (all 12 major types) is the homeless man at the entrance, trying to get into the building and getting nothing but looked down upon, ignored but occasionally a weak smile or head nod. Children's cancer reseach receiving 3.8% of all government cancer research funding (with some adult cancers getting 3 and 4 times that alone) is like getting the seat at the back of the church but given the obligatory wave of the hand. It is the homeless man, being taken to the rear and hoping he will just go away or not be seen.
For funding, there are no offers or promises of anything more. In fact, when the current administration is asked about funding to the National Institute of Health (NIH) for cancer research, the response is that funding will not only not increase, it will likely decrease. All these and others will someday, as a result of our efforts for awareness for children's cancer issues, be the shamed congregation. So, we will raise awareness, we will increase funding for research and we will do it through the private sector. Shame on those that ignore our children, and shame will be for them.
Help us at Cannonball Kids' cancer by making a donation today at cannonballkidscancer.org. Your donation goes directly towards funding pediatric cancer research trials. Only research and development through trials and bench to bedside work will stop this madness. We believe we can do it. Thank you.