“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!
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