Tuesday, February 24, 2009

Prioritizing Neuroblastoma Research

The New Approaches to Neuroblastoma Therapy (NANT) meeting is right around the corner. In fact, late next week I will be basking sea side looking out the windows wishing the conference could be moved out doors. As part of this little yearly excursion, I have the deep honor and responsibility of presenting the parental perspective of the research process to all of the investigators in the room. Thankfully there is a pretty vocal group that I work with and everyone has been pretty forthcoming with ideas.

There are two points that come up every year. These subjects are the speed at which research moves and the need for more options for children. I am usually bombarded by email in the weeks preceding the meeting. Other parents want to ensure that we get these points across. The funny thing is that there is no doubt that the researchers and oncologists that attend these meetings feel the exact same way. For the most part, they are not just researchers, they are also oncologists. That means they are treating children with neuroblastoma everyday. Considering they are a collection of most of the best of the best they are also seeing the hardest and most dire cases. Trust me, they understand the need for drugs to help save these kids and they too are desperately searching to find answers quickly.

So, if we both believe the same thing, why is it still so slow and why don't our kids have more options?

See, to me, this is the really interesting question.

The biggest 2 problems that neuroblastoma faces in the research world is a lack of research funds and, oddly enough, a lack of patients. Believe it or not, it is the latter that causes more problems. We can only have so many trials open at any given time because we only have so many patients. For each trial we open up it slows down another trial because it is now taking patients from the other trial. So, although we may have more options, we may in fact be slowing down our quest for a cure. How do we make sure that we have the optimal number of trials open and how do we make sure that we are only having trails that include the most promising drugs and combinations?

Regardless of which side you are on, the answer is prioritization. The problem is how research is prioritized. This is where I see communication breaking down. Furthermore, I will argue that many times our two dreams, more options and hastened research, are often mutually exclusive. Often, what is best to speed the cure for neuroblastoma is not what is best for a patient with relapsed or refractory disease. It is a sad, but often true, reality.

We prioritize our children. When it comes to research, the medical community has to prioritize all children with neuroblastoma - not only those today but those that will be diagnosed tomorrow, next year, or in ten years. Their job as researchers is to save the lives of the most children with neuroblastoma. It is not our job which is, how do we save our child with neuroblastoma? As you can see, these are very different priorities and what is best for one may not be what is best for another.

Who is right?

I am not expecting an answer. I think we both are and I think a mix of the approaches is probably reasonable. Believe it or not, I also believe, to a certain extent, we are already achieving that.

The trick still remains in prioritization and this is where I think we are failing. On Thursday, I will dig deeper into this ever important issue.

Just because I have purpose doesn't make my purpose the only way.

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