WHY DOES IT TAKE DECADES TO BRING A NEW DRUG TO CHILDREN?

Well, it goes something like this:

Pharmaceutical companies spend time, expertise and money to discovery and development.

After the pharmaceutical companies develop a new drug (many times it's not so new, they revamp an old one), they send out proposals to universities and research institutions to conduct more research and clinical trials.

The FDA, then has to sift through an enormous report put together by the same pharmaceutical company that has a vested interest in getting this approved.

There is also the laborious task of working out the ethical kinks that will inevitably come up when dealing with a high-risk, vulnerable population.

Pediatric cancers are considered rare (only by those who haven't gone to a pediatric cancer ward and seen it so crowded that it's standing room only), so many companies feel that market/revenue potential is too 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 used in pediatric oncology are at least twenty 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 child 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 will make up for that.

For those of you who feel that I sound angry, too aggressive -check out this New York Times article on Research System.

Our lives begin to end the day we become silent about things that matter. Martin Luther King Jr.

Put the federal government in charge of the Sahara Desert, and in five years there’d be a shortage of sand. Milton Friedman

National Research Council. Making Better Drugs for Children with Cancer. Washington, DC: The National Academies Press, 2005.