- Posted August 7, 2014 by
This iReport is part of an assignment:
I have had some very interesting and eye opening conversations lately….It’s evident that many people are unaware in regards to the real facts about pediatric cancer.
I saw a comment yesterday where a particular gentleman basically said pediatric cancer is not a government problem and that we need to hold more fundraisers…his lack of knowledge only makes me want to fight harder.
St. Jude Children’s Hospital is run off of all fundraisers and donations…they receive ZERO government support to further cancer research, which they do every day they are open…It takes 1.6 million of donated money to run St. Jude’s a day...one day 1.6 million of donated money is gone….but despite St. Jude’s and many other major pediatric cancer hospitals enormous efforts to cure our children from cancer…it is still the leading cause of death by disease.
This year pediatric cancer became the number one killer of our children…period…surpassing automobiles and firearms. We need to quit using the word “rare” and pediatric cancer in the same sentence. They don’t belong together anymore and broke up a long time ago.
Let’s just look at this from a very simplistic approach….In America today if an adult, who by no choice of their own is considered of a minority group…whether that minority classification is due to race, gender, handicap, sexual preference…were denied equal access to government money allocated to fight their disease…we would be in a uproar and that would be unacceptable…there would be lawsuits and picket signs.
The National Cancer Institute spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers. Every day in America our children are discriminated against when it comes to research money for their diseases…it could be heart, kidney, liver, diabetes, and cancer…not one type of disease afflicting our children are equally funded.
So the government gives kids with cancer pennies of their budget…the pharmaceutical industry says pediatric cancer research is not profitable and currently has more money invested into medicines for erectile dysfunction than they do for our kids with cancer. Some of the chemotherapy our children use today are 40 years old and the “new ones” they are 20 years old.
My sweet Matthew first relapsed when he was on chemotherapy, that 40 years ago was found to have a high relapse rate. This particular chemo is still widely used today probably because it can kill cancer cells…but guess what?.... bleach can kill cancer cells as well that does not mean it’s effective.
We use this chemo on our children still because it’s all we have.
I was talking with Baby Adrian’s dad the other day. He told me that after Adrian relapsed and had run through all available treatments at Stanford that he decided to reach out to UCSF Benioff Children’s Hospital in San Francisco. Doctors at UCSF had found an experimental protocol that was new and specific to Adrian’s cancer. When his parents took him to get testing and paperwork done that was needed to qualify, a lumbar puncture revealed that Adrian's bone marrow did not have enough leukemia cells. They waited and retested a week later…he was still 2% shy from the required 20% and though oncologists at UCSF would plead on Adrian’s behalf to hold the spot open…because sometimes qualifying for these protocols takes an act of God …it’s like winning American Idol but instead of moving on to a successful music career you get to go try a bunch of medical experiments in hopes to save your life.
Baby Adrian would not make it to the second round...he would be disqualified because he didn’t have enough cancer on the right day….A cancer parent’s nightmare…Sweet Adrian would die from his leukemia only two weeks later.
The system failed Adrian, its fails the 7 kids we lose today, and it failed every child we have lost to cancer.
In the month of September most of our nation will be going gold and if we make enough noise maybe when the NCI sits down to decide their budget they will decide to equally fund pediatric cancer…I am sure if they do every other major cancer organization will follow suit