Sunday, February 8, 2015

Talk Science to Me.

For all the fuss about the importance of funding medical research, it has come to my attention that the
I have severe metro envy after visiting DC.
average bear has no idea what "research" really looks like.  But of course, before my own diagnosis with a serious disease, I was one of those average bears too.  Don't get me wrong, I knew research was important. I read and kept myself updated about the latest study results but frankly I had only a vague idea about how the results in those research papers were formulated.

Fast forward a couple of very full years and I am not only a participant in two important research trials but I also work as a cardiology research coordinator as well as dabble in patient and cancer research advocacy.

So - lest you think research is something found exclusively in the pages of medical journals, I'd like to take a moment to blow your mind:

Research is happening all the time, right in your own back yard. And you can help medicine make progress through doing things other than purchasing pink ribbon coffee mugs.  (Need a reminder?  Watch my Tedx pep talk here. )

This summer I had the opportunity to travel to Washington DC to serve as a Consumer Advocate for the Department of Defense Breast Cancer Research Program.  This is a very fancy title which means I was on the board that helped decide which research proposals received DOD funding for FY 2015.

Allow me to geek out a little here - but this was pretty much the coolest thing I have ever taken part in.

This was my first trip to the capitol and I was blown away by
 this amazing city. 
Hundreds of highly-trained, uber qualified people from around the world - both scientists and consumers - took part in this program, which meets whenever DOD research funding is doled out (frankly, not often enough, these days).  We were assigned to various panels and provided with several research proposals many months in advance.  These we were required to review in depth and provide our recommendations based on a set criteria.  Our recommendations were then presented and voted on during a confidential, closed door session.

Now, the BCRP is technically a military operation and the proposals we reviewed were proprietary.  In fact, everything about this experience - from military assigned computers to the security guards positioned at each door was a reminder that we were not in Kansas anymore.  It  also turns out the government tends to take their investments rather seriously.  There were even torrid tales of panel members being arrested and stripped of their credentials for leaking information in the past.  So, it goes without saying I can't share any of the fascinating information I gleaned in my time there (orange may be the new black, but it does not go well with my complexion).

But just between you and me - many of the details about this science were so far over my head that even if I wanted to leak information it would sound something along the lines of:  "So there's this new pathway they found on aggressive tumor cells that may make it so targeted treatments can be developed in the future which will allow my friends to live long lives, raise their children and hopefully not experience brutal side effects in the process."
I must have seen this view a thousand times in photos,
but there is something very powerful about actually
standing where great men (and women) have stood before.

Now at this point you may be questioning the validity of our American government that someone with such a rudimentary understanding of ridiculously specialized science would be placed in a decision-making role in charge of funding THE FUTURE OF MEDICINE.

You would, of course, be correct.

The scientists submitting proposals, as well as those who served on this board have, in many cases, spent their entire careers studying a single molecular pathway in the hopes of discovering a breakthrough.  These are brilliant minds who accomplished more before the age of 20 than most people (myself included) could even comprehend. And these are also people who dwell almost exclusively beneath the soft neon glow of laboratory hood lamps.

The research we were reviewing was brand-spanking-new-baby-science and the proposals which eventually receive funding will take place in petri dishes and mice models within progressive research institutions around the world.   But while it was exciting to witness "science in action", there was no mistaking, it was not the present generation of cancer survivors I was representing. Best case scenario, the technology discovered within the fine print of these research protocols will be 10-20 years away from being tested on a single human.

 But that's exactly how each and every medication, device and treatment on the market today started out.

Want proof?  Herceptin - the game-changing chemotherapy drug that will hopefully allow me and thousands of others diagnosed each year with aggressive, HER2+ cancers live long enough to raise our children - originated through funding provided by BCRP.
If these walls could talk...

All medical progress starts with an idea.  The idea must be tested and retried until it can be proven.  The idea must be able to be replicated in petri dishes, animal models, tissue samples, in healthy people and finally in those who are affected by the disease.  And then this same idea must prove to be more effective - and be accompanied by less toxic side effects than the current therapy.  And all of this must take place prior to receiving approval by the FDA.

Because of these strict requirements, any medication that actually makes it to market has basically won the research lottery. And if you have ever questioned why new medications come with such a steep price tag - it is often because investors must cover the costs of the myriad failures it took to discover a single success.

 But that's what it takes.   This is exactly why funding research is so important.  Progress is a building block, and it takes time, money and the expertise of people who have spent their whole, damn lives evaluating molecular pathways under microscopes.  Ultimately, even among the most promising proposals, around 99% of them will fail.  They will fail because that is also how medicine evolves - not because the scientists were not doing their job, or being wasteful.  Certainly not because of some "big pharma" conspiracy theory.
Abe-y Baby.

Anyone who believes that a cure for cancer exists but is kept safely behind lock and key has grossly underestimated the foe.  Frankly, I have seen the inner workings of cancer research and I am here to tell you - if there is a fault, it lies not in our stars - but rather our organization.

This is why, programs such as the BCRP are so monumentally important.  It is essential that each precious research dollar goes toward studies that will be effectively carried out by people who are knowledgeable and skilled.  But it is just as essential that at the end of the day, the research approved will help us to inch closer to common goals - decrease cancer related mortality rates, improve quality of life for those who undergo treatment, and ultimately find a way to prevent or eradicate this disease.

Which is where I come in.

Thankfully, my role in this panel was not to determine if the "elegant science" presented in these research proposals was promising or sound.  Rather,  it was to determine the impact this science could potentially have on the breast cancer community should it prove to be true.  By requiring consumer reviewers be part of this process, the scientists gain the perspective of the people they eventually want to benefit.

Seriously - this city is stunning.
If you've never been, find a way.  You won't regret it.
I was far from alone in my role as a consumer reviewer.  In fact, the orientation room was filled to the gills with strong, dedicated men and women intent on representing the tens of thousands diagnosed and living with breast cancer each year.  Some of us had medical experience, many did not.  But all of the reviewers had two things in common - we each had experienced breast cancer first hand and we were all currently active in advocacy.  I was nominated by Young Survival Coalition however there were also representatives from ACS, Komen, Tiger Lily Foundation and many other organizations.

Though I cannot discuss the panel I served on or identify the brilliant minds who served with me, I can tell you it was an amazing experience - and though it is a commitment of time and brain power, I would certainly encourage others to serve as well.  Flying home from our nation's capitol, I left with a renewed sense of optimism about the future of breast cancer research - as well as with a few awkward nerd crushes on the scientists who are helping to make life better for people like me.

And who doesn't need a good nerd-crush now and then?
DC - especially the Smithsonian Museums is
probably my version of Disney Land.
I could spend weeks exploring.
I hope to come back some day soon.

Nerd note:  Amazingly, this same careful review process occurs every time DOD research funding is doled out.  (Interested in participating as a consumer reviewer?  Learn more about the Breast Cancer Research Program here.)   Actually, there are also programs relating to other types of cancers, autism, spinal cord injuries, orthopedics and a multitude of other diseases.  These panels need representation from consumer reviewers in order to effectively point research in the right direction.  Interested?  Here's a link.