Why does it take DECADES to bring a new drug to children?
Well, it goes something like this:
- Pharmaceutical companies develop a new drug (many times is not so new, they revamp an old one) in their labs, then they send out proposals to universities and research institutions to conduct more research and clinical trials.
- The pharmaceutical company will pay for the research and trials in hopes that the drug will be effective (or at least show "statistically significant" aka bullcrap) effects and eventually get approved by the FDA (you know, after they read a 2 million page report put together by the same pharmaceutical company that has a vested interest in getting this approved) and because the FDA wasn't involved every step of the way, they have many, many questions that need many, many answers.
- Since pediatric cancers are considered rare (only by those who haven't lost a child to cancer or gone to a pediatric cancer ward and seen it so crowded that it's standing room only), the market potential (translation - $$$$) is very small, so few drug companies bother with trials specifically for childhood cancer.
- A report by the Institute of Medicine, a non-profit group that advises the government on health policy, states approximately half of the oncology drugs to treat children are at least 20 years old.
"Despite a wealth of tantalizing leads from basic science, there is a near-complete void in commercial R&D for pediatric cancer. As devastating as cancer is in children, the numbers affected are too small to drive innovation in the private sector." Institute of Medicine
The treatments available today just don't cut it. Trust me, we tried every one. Especially with pediatrics, there is always the question - "Which will kill my baby first, the cancer or the chemo?" Unacceptable!
Also unacceptable are the politics and traditions that surround getting treatment to those who need it now, not years later. These kids don't have months, let alone years!
A well-wisher said to me when I was explaining the foundation, “My sense is this will really work for you; just give it some time." I welcomed the optimism but that belief that ‘with time’ it will work is exactly what I’m fighting against. These kids don’t have time.
Lucia ran out of time and nothing, nothing will make up for that.
For those of you who think I'm a bitter, old hag (well that may be true but I'm still not wrong!) check out this New York Times article on Research Grants System.
Our lives begin to end the day we become silent about things that matter.
Martin Luther King Jr.
If you put the federal government in charge of the Sahara Desert, in five years there’d be a shortage of sand.
Milton Friedman
