The world's greatest science ever!

Okay, so I have received a ton of email asking about the research I discussed while in Washington, D.C. Unfortunately, I signed a mountain of confidentiality agreements stating that I would not discuss it. The bottom line is this. I saw some incredibly interesting research that could have significant impact. Unfortunately, I also say some incredibly idiotic research. Yes, I said idiotic. And, if you know anything about me at all, you should know that I had no problem expressing my opinion at all. It actually made for some of the lighter moments in our discussions.

There were several proposals that presented some really flashy ideas - lasers, liposomes, and antibodies where my favorite. Unfortunately, for many of those, I did not see any significant impact on our lives. They were flashy. They were snazzy. In fact, they were really, really cool. Unfortunately, when you got right down to it they were completely useless to a child with neuroblastoma.

I sound bitter, don't I? Well, I don't mean to but let me give you a hypothetical example so you can understand. There were several proposals that fell into this category - again this is a hypothetical example.

A non surgical approach to removing neuroblastoma tumors with a laser.

Doesn't that sound cool? A laser that can successfully cut out and and evaporate a neuroblastoma tumor. Price tag - $2 million. Cheap considering the fact that you could now have surgeries - without surgery. No incision. No blood. No recovery. Magic!

Of course, this is what they would like for you to believe in the funding abstract. However, upon delving further, you would realize that this laser could only penetrate the skin to a depth of 1 centimeter at its maximum. So, in this sense, it may be great for the mice that they were testing it on. All of which had small tumors on the surface of the skin. Unfortunately, for child with neuroblastoma, a typical tumor of Sydney's size 5cm x 9cm, and located in a typical place (like the center of the abdomen); it would be completely and utterly worthless for children with neuroblastoma.

Like I said, really incredibly cool idea. Lasers are awesome.

Completely useless to children with neuroblastoma.

Ideas like this were at first met with excitement by many of the scientists. After all it was innovative. However, that was the reason that the clinicians and advocates were there - to gauge the impact on patients. We would get our point across and eventually it would be discovered that it was presented by a physician who specialized in skin cancer (a disease that would likely benefit from such an incredible tool) who, unfortunately, was only interested in getting a hold of some of the funding that was potentially set aside for neuroblastoma. I was amazed at the number of proposals which clearly utilized search and replace to insert the word neuroblastoma in for another disease in order to qualify.

Wow, all of that sounds really depressing. So, let me say that there was also a large group of truly innovative and meaningful proposals as well. Once again, there were several impressive collaborations - some from institutions that many would believe were at complete odds with each other. I was also impressed with the number of proposals which were focused on ideas that could truly increase efficacy while also reducing toxicity. Medical technology has come a long way and I was truly impressed by some of the innovative ways researchers were utilizing liposomes and antibodies to target therapy. There were voluminous examples.

I came away with two significant realizations. First, the clinical and patient experience are critical to making good funding decisions. I was amazed by the number of proposals with great science but little, if any, impact. In this way, I was also surprised by the number of proposals from scientific experts in the field which totally misunderstood the treatment of neuroblastoma. Second, I was amazed by how many of the titles and abstracts completely misrepresented the material that was actually found in the proposals. In many abstracts that include claims that were flat out false. There really should be some regulatory body for that. It was ridiculous. DId you notice my title to this entry. How does that make you feel? Cheated?

Overall it was a fun exercise and I walked away feeling like we made some very good decisions. I also believe that if our guidance is followed some very important and meaningful research will be making its way into our lives and the clinic.

Let's hope the DOD has purpose too.