- 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. If he only knew how many bake sales, shaved heads, and begging the pediatric cancer community has done already...There has actually been millions of dollars raised and that won’t stop, but real research the kind that cures cancer will take millions more. Our children who are dying and suffering from lack of effective cancer treatment can't wait. Our survivors who face a lifetime of complications and secondary cancers due to treatment cant wait.
Today all combined efforts to fight pediatric have not been enough. We need the NCI and all major cancer organizations who receive tax paid funds and donations to #StepUp and support our children with cancer by giving them more than 4%...more than pennies...more than leftovers medicine.
The NCI’s trickle effect concept of "cancer treatment that works for adults must also work for children" is really not using much science or research at all. My son was diagnosed with infantile leukemia I wonder how many adults are diagnosed with infantile leukemia...I would guess zero but that’s just a guess. Could we use the same trickle effect concept for seat belts? But yet more science and research has gone into the safety of seat belts than the safety of the medicines we use on our children.
The NCI often likes to ride on the curtail of St. Jude Children’s Hospital and forward progress made at other pediatric research hospitals but yet the funding they grant these hospitals is very small. St. Jude's is run off of all fundraisers and donations…It takes 1.6 million of donated money to run St. Jude’s a day...one day and 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.
Let’s look at some of the funding issues with pediatric cancer...The American 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 and premature balding than they do for our kids with cancer. Some of the chemotherapy our children use today is 40 years old and the “new ones” those are 20 years old.
My sweet boy 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. What this particular chemo has also managed to do is make a profit for nearly 40 years.
We use these leftover medicines on our children because it’s all we have.
There are countless stories where "all we have" is not enough, I was talking with cancer warrior Baby Adrian’s dad the other day. He told me that after Adrian relapsed and had run through all available treatments at Lucille Packard's Children Hospital that it was decided to reach out to UCSF Benioff Children’s Hospital in San Francisco. Doctors at UCSF found an experimental protocol that was new and specific to Baby 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%. Oncologists at UCSF would plead on Adrian’s behalf to hold the spot open…because sometimes qualifying for these protocols is like winning the lottery… a chance in a lifetime. However Baby Adrian and his parents would not win the lottery ...Adrian 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 protocol spot could not be kept open because there was not enough funding to wait. These spots need to be filled and only the most qualified will get the spot...basically we can't afford treatment for all cancer kids only some.
The system fails again and again.
Now let’s look at this from a equality 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…our state would be in a uproar with 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 is equally funded. This has to change and there is no more time for red tape runarounds.
It’s a simple matter of breaking out the check book...First check written to the Gabriella Kid's First Research Grant.
Why #MoreThan4 because they are worth so much more that’s why.