Wednesday, November 5, 2008

A Translational Tangent to the NCI

Everything is scheduled. I heard from Dr. Eames on several occasions yesterday. Sydney is all set up for her bone marrow aspiration and biospy first thing on Monday morning. She will begin the process with a clinic visit tomorrow morning for a preoperative checkup. Dr. Eames was nice enough to coordinate this for me as I will be travelling from Friday through Sunday to Washington, D.C.

I am serving as an advocate for the NCI at the NCI Translates convention. It should be a very, very interesting trip and I am really looking forward to it. The whole purpose of this meeting is to evaluate the NCI's entire portfolio of cancer research and to prioritize it based on how well it can be "translated" into meaningful treatments. The entire purpose of this meeting is to accelerate translational cancer research. Our job as advocates is to bring our consumer perspective into the process. Their belief is that our input will help them identify and focus on what is really important and provide the necessary sense of urgency to move forward quickly. It is also the hope that we will bring relationships and knowledge from the outside of both NCI and non-NCI related activities into the discussion.

I often see and hear people complain that people aren't doing enough when it comes to cancer research. I have seen people blame the COG, the NANT, the NCI and even individual institutions like Sloan Kettering and St. Judes. I have heard people claim that the doctors and researchers don't care - that they are only in it for their own intellectual pursuits. I have heard many claim that they don't care about the children. I am here to put my foot down and to say that is WRONG. It simply isn't the case. I have met many researchers and physicians over the years (1000s) and I am yet to meet one single one that was not passionate about creating a change for our children - even a few that did not even do research in pediatrics. The problem is not the people. They are committed - at every level. I have been advocating for years and with the exception of one single issue (which I see both sides of) I have seen constant change as the medical community has made changes to move faster and more efficiently. There are problems with every organization but most of it has to do with bureaucracy and less to do with research. They are working hard to create change at every level.

Are there problems?

ABSOLUTELY! There is lack of funding? And, in our case, patients? There are political pressures extraordinaire. There are issues (in our eyes) of prioritization. There are problems with the pharmaceutical industry and the insurance industry. And, don't forget what a mess the legal system has introduced into all of this. But, don't doubt for a single second that there aren't thousands of well respected scientists and physicians that are out there fighting for our kids everyday trying to make a difference where they can.

Wow, so that was a tangent. Sorry, I am a passionate guy.

That is what purpose does to you. Bring it on.

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