Changing The Dialogue About How To Change Cancer Research
For those who know me, it’s shouldn’t come as a surprise to learn I employ a low tolerance line for BS and live a guiding philosophy that tows a fragile line between “cautious optimism” and downright jaded cynicism.
For those who don’t know me, see above.
I am a disruptive and authority-questioning advocate for what I believe is right. I also try to stay objective to the conversation to deliver meaningful value to those willing to listen. So, when the other side of the coin is presented in a credible, legitimate and honest fashion, I’m unexpectedly pleased to rethink my opinions.
And StandUp2Cancer (SU2C) has done just that.
A little back-story…
SU2C was unveiled 18 months ago as “the beginning of the end of cancer.” A massive fundraiser telethon organized by some of the most influential women in Hollywood, it pledged to raise $100 Million for cancer research. I was cynical by default – if only due to my pre-existing disenfranchisement at the lack of recognition given to the young adult cancer community, a population within the continuum whose survival rates have not improved in 30 years. (Seeing as how the last 30 years of cancer ‘progress’ have failed the next generation of survivors, I had no reason to think the next 30 will be any different unless some kind of real change came along.)
Would SU2C be like the others; dismissive and uninterested in understanding the cause “cancer under 40″? Or, would they be open, receptive and willing to consider the possibility that actual progress and true innovation in cancer research involves an even split between “scientists in white lab coats” and “real world issues” such as medical education, access to quality care, age-appropriate peer support, insurance, fertility?
SU2C exceeded their fundraising goals during the summer of 2008, shattering all preconceived notions of what was possible. While impressed, I was still concerned whether *any* of that money would benefit young adults, a decision which would be objectively made by the American Association of Cancer Research (AACR), one of the nation’s most reputable institutions.
iy encouraged the young adult community to put pressure AACR through a Facebook campaign (which at one point had over 30,000 members) to hear our voices. It was our hope that they would listen to our voices and be objective when considering which dream teams to fund, should any of them be innovatively focused on the unique epidemiological factors in young adult biology.
As it turns out, this was not to happen. The teams which were funded are focused on research which is targeted to benefit the majority population of survivors, aged 40 and over. (Normally, this is the part where I air my grievances)
But not this time.
The research being funded by SU2C is “translational” as opposed to “basic”. What does that mean? Surf on over to http://bit.ly/5UzEF for a quick 101 on the very significant difference between “basic” and “translational” research.
SU2C is clearly changing the conversation when it comes to cancer research by choosing to operate under a new philosophy. This is definitely not the mentality of your grandfather’s cancer society.
With that said – and while there’s nothing wrong with more cancer research – it’s important to recognize that advances in treatments are only as good as the stage at which you are diagnosed.
*This* was precisely the case we wanted to make to AACR and SU2C.
Young adults, aged 15-39, are the population most likely to get diagnosed at a very late stage, where the cancer has progressed and advanced to the point where survival rates are lowest. Why? This population faces unique barriers to prompt detection such as a lack of medical insurance or dismissive medical providers who are not trained to consider the possibility that cancer CAN and DOES occur in our generation.
Ergo, what good are advances in cancer research when they generally have nothing to do with reducing the risk of late-stage diagnosis?
*This* is the conversation.
*This* is the young adult cause.
Apparently we made enough noise to get noticed because SU2C reached out this Summer with interest in meeting with us in Los Angeles to listen to what we had to say. And so, on Tuesday, August 11th, both myself and iy Board Chairman Dr. Leonard Sender sat down with SU2C and opened the conversation.
The good news?
iy will be continuing our dialog with SU2C and evaluating opportunities for how we might work together to bring more attention to these important issues.
It’s not just about white lab coats anymore, people!
It’s about improved medical education to ensure prompt detection, age-appropriate social support both online and offline, access to clinical trials and let’s not forget about those Stupid Cancer Happy Hours!
WE DID IT!
I have never been more proud to be a part of this intensely passionate community of extraordinary activists. Stupid cancer! Survivors rule!
Stay tuned and Rock on!