Below is the letter I composed to CNN this morning:
650 cases of Neuroblastoma will be diagnosed this year in the United State.
My daughter Charlotte was one of them. She was diagnosed with Neuroblastoma - a deadly childhood cancer- when she was only 4 months old. After 8 rounds of chemotherapy, she has reached the end of her treatment. Now, we are focused on spreading the word about her illness, reaching out to other families that are going through what we went through, and thanking everyone who has given us support. So far, we have been featured on two local news stations, have our own blog, and our own website. With your help, we could touch so many people that feel like they are all alone in this world.
We don't want pity or sadness- we want outrage.
Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period.
What are the major challenges currently confronting pediatric cancer drug development?
Cancer in Kids Is Not Profitable!
Cancer is the most common cause of nonviolent death for children in the United States. Ove in 300 children will be diagnosed with cancer by the age of 20 years. Yet, the total number of new pediatric cancer diagnoses is miniscule compared with the total number of new adult cancer diagnoses. Whereas 12,000 to 13,000 new cases of pediatric cancer are diagnosed in the United States yearly, a staggering 1,368,030 adults were diagnosed with cancer in the United States in 2004. For additional perspective, there are more cases of breast cancer diagnosed in New York State each year (15,190 in 2004) than there are new pediatric cancer diagnoses nationwide. Once pediatric cancers are broken down by individual diagnoses, their numbers relative to adult cancers become exceedingly small.
With the average cost of research and development to bring one drug to market at $802 million and given that 1 in 1,000 new compounds that enter preclinical testing ever make it to human testing and only 1 in 5 agents that enter human trials receive FDA approval, it is little wonder that pharmaceutical companies would hesitate to invest in pediatric cancer treatments.
So, I guess it should come as no surprise that my own daughter was treating with (you guessed it) adult chemotherapy agents in little tiny baby doses.
Because I'm sure you get a million story ideas similar to this sort of rant a day, let me also throw in that my husband and I are fighting this battle at the age of 24.
And I don't intend to take it sitting down.
By the end of school today, 46 more children will be diagnosed with cancer.
Something has to be done to break the cycle.
Where is your outrage?
Thank you for your time.
Kristi M. Rufener
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Great rant.
ReplyDeleteMay be worth mentioning that the reason there are so few kids diagnosed with cancer compared to adults is that adult cancers are mostly caused by the lifestyle the adult chose to live (smoking, drinking, etc.), where they lived/environmental, foods they ate, etc.
Kids cancers are almost always non-genetic, cell mutations - not caused by "bad living."
This is why it's so sad that there have been only TWO drugs made specifically for use in kids' cancers in the last fifty years. Everything else our kids get is a hand-me-down from adult cancers that are "similar" to the kids cancer. How similar can they be? None of these hand-me-down drugs are proven to be a cure.
I am the co-founder of a non-profit organization in SoCal bent on raising funds and awareness for pediatric cancer research. If people just knew...
My son, Max, lost his battle with neuroblastoma 18 months ago at the tender age of seven. This is now my calling.
I'm glad to see you tkaing the call, too.