- 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 can’t wait.
Today all combined efforts to fight pediatric have not been enough, especially when 7 children in America die a day from cancer.
We need the National Cancer Institute (NCI) and all other major cancer organizations who receive tax paid funds and donations to #StepUp. We need more support...more than pennies of a billion dollar budget...and more than leftover medicines.
The NCI’s trickle effect concept of "cancer treatment is a one size fits all" 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? Yet more science and research has gone into the safety of seat belts than the safety of the medicines used on our children.
The NCI often likes to ride on the curtail of St. Jude Children’s Hospital and the 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 and despite St. Jude’s and many other major pediatric cancer hospitals enormous combined 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 a billion dollar research budget because they still are hiding behind the campaign that "pediatric cancer is rare"…the only rare thing about pediatric cancer is research funding.
The American Cancer Society and other similar big cancer organizations follow the government’s lead taking in millions of dollars per year of donated monies and giving out only pennies to children fighting cancer.
The pharmaceutical industry says pediatric cancer research is not profitable and currently is invested into medicines for erectile dysfunction and premature balding than medicines for kids with cancer.
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 too it's just not an effective means to kill cancer because bleach is harmful and toxic much like cancer treatment is to our children, and a cure a real cure, should not kill you.
What this particular chemo has also managed to do is make a profit for nearly 40 years and making a profit is more important than saving a child from cancer. Cancer parents 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 true 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 for Baby Adrian. These spots need to be filled and we can't afford treatment for all cancer kids...only some.
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.
The system fails again and again and it has to change. There is no more time for red tape political runarounds. It’s a simple matter of breaking out the check book.