The below post was originally posted HERE in March 30 2012. It illustrates why your support is so important – and how groundbreaking work will only take place in our current broken system if we make the choice to fund it ourselves. This is why you are all so awesome!
In 1930 a graduate student at Harvard University created a laboratory apparatus to assist his research in studying behavior. The box was very simple in structure in that it was large enough to house the animal being used for the study and it contained a lever or button to be manipulated and a device to deliver a reward.
This device was created to study a form of learning that is called operant conditioning which is essentially a person or animal making a choice to voluntarily alter their behavior after becoming familiar with consequences of that behavior ( when I do x – it results in Y. If I do not like Y then I do not do X or vice versa). As simple as this box was in both structure and function it proved to be an extraordinarily effective tool in studying behavior as it relates to reinforcement or punishment..
The operant conditioning box – aka the Skinner Box seen above – showed how this behavioral process works. You can see the pigeon looking at the black & white keys in the first photo. In the second one you see it peck the black key, and then in the final photo it sicks its beak into the food chute to retrieve a food pellet. Through trial and error the pigeon learned that hitting the white key did nothing but hitting the black key rewarded him with a pellet.
The pigeon learned to modify it’s behavior through receiving this reward. Soon the pigeon would never hit the white key and this led to further and more complicated experiments involving multiple levers, rewards, and punishment and is still in use today.
I first learned of this box, like many of you, in my high school psychology class and I am reminded of it often.
This morning I read an email from an NB advocate and mom that showed in the past 10 years – according to PubMed – there have been 10,992 publications on neuroblastoma. Remarkably out of all of those publications there were only 240 out of the 10,992 – just 2% – that were clinical publications (aka..actually offering treatment to patients and not necessarily treatment that works or is even effective but at least it was a therapy and not just a paper). This was also true for other childhood cancers as well.
So why are there so few clinical trials? There are a number of factors and reasons at play.
But for me I think that the problem is how funding is awarded to researchers and clinicians in this country. The dollar amounts available keep shrinking but the real problem still exists and that is how and why grants are awarded. Grants are in no way tied to – nor do they reward – anyone who is focussed on the actual goal of all this research.
What is the goal of any childhood cancer researcher or clinician? Saving kids.
The goal should be to find targeted low toxicity therapies that can either eradicate the cancer cells while leaving the kids intact or a drug that makes cancer a chronic condition like diabetes. It does not go away, it does not get worse, as long as you take low toxicity drugs to keep the cancer in check. That is the goal – effective clinical trials – but that work is not funded.
So why is that seemingly impossible?
Are the doctors not smart enough? Committed?
Is technology to slow to evolve?
Is there not a desire to save children from painful death?
Of course not.
The problem is that once you become a PhD and get hired to work in a lab the clock starts ticking. Unlike the world I am used to working in these doctors – after being hired in a prestigious hospital – have some seed money to get started but immediately need to start getting funding to pay for their salary if they want to work in a lab. Those mice are not cheap, nor are lab techs, lab managers, supplies or postdocs. If you want to have a lab you quite literally need to pay for it.
But how does a newly minted researcher do that?
They need to publish papers because in medical academia the motto is ‘publish or die’. If you want to file to the NCI (tax dollars) to get a grant to fund your lab you are not going to get it on good looks and charm and the University certainly is not going to pay for it. If you can’t generate your own lab money you lab goes away. Your staff loses their jobs. Your friends can’t pay their mortgage or send their kids to preschool. Literally.
So you need grants. To get grants you need to be published. To be published you need to get some experiments done while the clock is ticking in your first two years as a researcher. Suddenly you might gain traction in an area of research that you don’t even care about because your seed grant is running out.
These brilliant, dedicated, hard working and intelligent doctors have to spend the majority of their careers focussed on doing work that pays their lab bills. Their hope is that one day they can get enough grant money or an endowed chair (money put aside to pay for this persons salary) so that they can one day in the twilight of their careers FINALLY get a chance to do the work they want to do.
To do the work that gets them excited and burns their passion.
To focus on making a difference instead of getting published.
This is what is wrong.
This is why every 4 hours another child dies from cancer in this country.
In order to get their reward of a grant to keep their lab open and their careers on track they are forced to peck the black key. They want to peck the white one – but no grants come rolling down the reward chute when you poke that key.
The National Cancer Institute and the peer review grant process in this country hold most of the funding dollars. They way they award our tax dollars simply generates more preclinical papers in journals that are never going to make it to the bedside of a child dying with cancer.
I have never had an opportunity to know any doctors or researchers until my son was diagnosed with cancer. I have had a chance to get to know some doctors and researchers very well and in Vermont I met a number of medical students.
These are very impressive people.
They are all highly intelligent, highly motivated, committed and hard working people who do more in a day than I do in a month. They could be highly successful in anything they do but they selected medicine and research because they are passionate about it and want to make a difference.
They all share the same goal that we parents have to save these kids.
They are simply handcuffed by the system a system that does not reward anyone for trying to achieve the goal that we all share
Universities like donor dollars as long as they are unrestricted and can be used as they see fit. When it comes to their researchers they much prefer multi year NCI grants for their labs so there is intense pressure to get these grants.
This creates a cycle that pulls these amazing people who can make a difference further away from the work that will allow them to succeed.
The goal is to save kids but the grants are not given in a manner to reward researchers for trying to reach that goal.
They are forced to strike the black key because maybe this grant cycle will get one one step closer to finally getting to do the work you want to do that can actually save these kids.
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