A Fulcrum of Purpose

I have learned many things since we first began our journey through the neuroblastoma world. However, one of the biggest veils to be lifted from my eyes has been the politics behind so many decisions in the research world. This is not to point fingers. Much of it is due to what they call the "scientific process" I call it haggling. Regardless, there are so many different factors at play it is often difficult to put your finger on what is truly happening. Parents often blame researchers for being the reason that it takes so long to move new drugs and trails forward. After all, it is generally the researchers names who are on the protocols. Who else are you going to blame? What I have come to find out is that the answer is - not them but nearly everyone else. The researcher is hardly ever the problem. To this date, I am yet to see research slow due to the researcher. I have seen it due to pharmaceutical companies, the FDA, the NCI, an IRB or a myriad of other factors. With the limitations of resources and patient populations I have also seen things slow as researchers fight and jostle for position and priority amongst their competition. Everyone believes in their research and data. Even the most promising ideas hit roadblocks. Regardless, my point is that there is a lot that goes on behind every clinical trial and I am always amazed at the different factors that come to play.

In this sense, I am always interested in what is happening behind the scenes. We often hear that a trial was opened or that something got funded. We rarely get insight to all of the work and effort that it took to get there. That is my favorite part. That is how you speed things up. That is how you make things happen.

You may not be aware but the National Institutes of Health (NIH, the parent company, if you will, of the National Cancer Institute, NCI) quietly received an increase in their budget of 34% due to the stimulus package. I would love to take credit for that idea when I suggested it a month ago but I don't think they read my diary. While the dollars have not been carved up yet I fully expect to see a substantial increase in the NCI's budget as well. While I hope and pray that the trickle down effect works for pediatric cancer, I can already tell you that many of neuroblastoma's researchers are working to get those dollars.

What do these two stories have to do with each other?

Well, like I said, I am always amazed at what happens in the background to make things like this happen. In this case, much of the story was captured in the New York Times. To my surprise, a very savvy Arlen Spector, got the job done. It is worth a read. You can read the article here:

http://www.nytimes.com/2009/02/14/health/policy/14specter.html?ref=science

Pretty incredible, huh? It is amazing to me how solutions often come down to the quiet actions of those with purpose, drive, and focused energy.

This is an incredible example of purpose at work. It just makes me want to try harder.