“So, what are you going to do about it? You are thinking so small” said the voice on the other end of the line.
What am I going to do about it? Think bigger I guess!
For starters, I suppose I should tell everyone I know what I think IT is. IT is the hurdle that those of us with exceedingly rare cancers face when we try to champion our diseases. IT is the lack of power that we have after we take off the blinders and see that our tremendous efforts only lead to a tiny dent in the armor of the biomedical and pharma establishment. IT is the lack of collaboration that we are all guilty of as we focus only on our own indication.
I for one am happy to admit that I am part of the problem. Since my diagnosis with an exceedingly rare cancer 4.5 years ago, I have lived and breathed angiosarcoma. Got angio? Talk to me. Want to research angio? I’m your girl. Need support, I’m here to help. And it’s not just me. We have a flourishing support group with thousands of people who offer every single part of themselves in our collective fight..against angio.. And here’s the kicker, I wouldn’t change a thing, even as I rack my brains to come up with bigger and better thoughts.
So how do we resolve these seemingly disparate initiatives? How can we maintain our identity while becoming part of a larger more powerful lobby (for lack of a better, more meaningful word). I don’t have the answers, but I am willing to throw some ideas into the ring. Maybe by opening up a dialogue with anyone else who is willing to talk, we can come up with innovative ideas that could lead to meaningful reform that would benefit more people with rare cancers.
Here are some thought’s to get the ball rolling:
Find the areas in research where everyone wins if we come together and fund cross-indication large-scale endeavors. Recent technological breakthroughs and success in cross indication trials have underscored the fact that there is a new paradigm in the world of cancer research. The walls are coming down, and in their place will be remnants of borders left on path slides. We will be defined by the genetic mutations in our tumors, and the biomarkers that indicate whether we are likely to respond to targeted therapies and immunotherapies.
But, we will need quite a bit of translational research that no one will fund but ourselves. Want strength in numbers? Fund genomics and biomarker initiatives that span ALL sarcoma sub-types, or better yet, all rare cancer subtypes. Have foundations that are focusing on individual grants to this effect chip in for institute wide studies. There’s power in numbers here, not only statistical, but financial. We will all win if a bunch of us put small grants together for the same research study. And we can do this while maintaining our autonomy. If we as a group fund a 25k angiosarcoma genomics study at MDA, we will get a few tumors sequenced, we may find out what genetic drivers are part of the incredibly complex puzzle that drives our disease. However, if we as a group put that same 25k into a study with 10 other groups, those same few angiosarcoma tumors could still get sequenced along side tumors from other subtypes. Trends could pop out that would never be found without the statistics that larger-scale studies afford. Better papers will get published, more researchers will take notice, oncologists might find more avenues that are druggable. And the best part is, so many more people will benefit.
I’d love to hear some other ideas. I’m also up for a candid discussion about why my ideas might not resonate. All thought’s are welcome!