Two weeks ago I started receiving emails and press releases about a new international collaborative project, code name “Black Swan.” The brainchild of Dr. Brian Durie and his wife and President of the International Myeloma Foundation, Susie Novis, the initiative is described by the IMF “a unique project to develop the first definitive, measurable cure for myeloma.” I have intentionally held-back reporting about Black Swan for a couple of reasons.
As an IMF support group leader, I had been allowed to preview an early overview of the program, starting with an introduction to the possibilities of the ambitious initiative the last night our IMF social media group met at ASH in December. I was impressed by the unique philosophy and bones of the project, but of course didn’t have many details.
So like everyone else, I had homework to do once details of preliminary work that the Black Swan group had done began to be released. Knowing that might help you understand why I didn’t rush to promote Black Swan. I was already working on several different projects, including an expose’ that follows Celgene’s controversial research and manufacturing timeline, starting with thalidomide (Thalomid), moving on to lenalidomide (Revlimid) and now pomalidomide (Pomalyst).
And regardless I sometimes delay passing-along announcements like this until the dust settles and I can better understand how they might impact me and my fellow multiple myeloma patients and caregivers. That’s what our readers trust me to do here at MMB, and I take my responsibility seriously. In other words, in a world full of PR and spin, I like to vet this stuff first.
Usually I relegate drug company and related foundation press releases to MyelomaNews.com. I post things there raw and rarely interpreted; its a news dump where the value of the information is primarily left-up to the reader to interpret. But this news was too big to just put-out-there and not comment about. I needed time to wrap my head around this announcement and think-it-through.
Second, with my inbox flooded with hype about Black Swan, I figured the myeloma community would be getting hit with plenty of news about it; I could afford to sit-back and sort-out my feelings about it all. After all, shouldn’t news this big be covered by the mainstream media; the Wall Street Journal, New York Times, AP and others?
Turns-out I may have been wrong about the second one. Well known West coast myeloma blogger, Nick Van Dyke, sent me a long email about it on Monday:
Are you familiar with the IMF’s “Black Swan” initiative? It seems to me this is a landmark occurrence that is being under-reported.
Essentially it’s an admission that myeloma is curable…
Nick goes on to write passionately about his experiences with Total Therapy in Arkansas. Nick is a friend and supporter of program creator, Dr. Bart Barlogie at UAMS. He believes that Dr. Barlogie has been able to use Total Therapy to cure a large percentage of low risk myeloma patients. Nick is understandably excited about a group like the IMF–that has never conceded multiple myeloma can be cured–would make such a grand pronouncement about it now.
See, there are so many directions I can take this, I wanted to be careful things didn’t get redirected away from what I feel are the most important components of the initiative.
I’m still not happy that I need to write about this so quickly. Honestly, you can probably tell I’m very conflicted. One could justifiably point-out that I’m making this all too complicated. Dr. Durie has gathered a group of international myeloma experts together to try to eradicate multiple myeloma, using some “outside of the box thinking.” End of announcement.
Simple enough. Except considering what I know and what I’ve just shared with you I can already spin this in a half dozen different ways. But as I often do, I’m getting ahead of myself. I’m making the assumption that our readers understand what Black Swan is and what it’s trying to do.
Look, Black Swan might be a real game changer. But it could just as easily be a whole lot of nothing.
That’s why I would like to take my time and work through this with you–our incredibly sharp, experienced and intuitive readers. Together maybe we can inspect Black Swan and decide where it rates on the yet-to-be-invented MYELOMA METER. You know, like one of those “Pants on Fire” PolitiFact truth meters the newspapers run around election time.
So let’s start with information released by the IMF over the past few weeks:
FOR IMMEDIATE RELEASE
International Myeloma Foundation – March 12, 2013
BREAKING NEWS: International Myeloma Foundation Announces Black Swan Research Initiative™
We are exceptionally pleased and excited to announce the launch of the BLACK SWAN RESEARCH INITIATIVE™ (BSRI™), a unique project to develop the first definitive, measurable cure for myeloma. The BSRI is led by a multi-national consortium of leading myeloma experts who see that the opportunity for definitively curing the first cohort of patients is now within reach.
Initial work began on the Black Swan Research Initiative in the summer of 2012. Now with the full launch of the initiative, we expect to have new testing capabilities available and new clinical trials underway before the end of this year.
The Black Swan Research Initiative takes its name from the discovery of black swans in 1697, when it was assumed all swans were white. No one could even imagine a black swan. That’s how we feel about developing this cure for the first group of myeloma patients. No one could even imagine it. But once we wrapped our minds around the concept the science began to gel.
With new molecular testing we can classify subgroups of patients and determine who might benefit most from which treatments. We have learned that early intervention – at onset or at relapse – has the biggest impact on disease. But most important, with new capabilities to test for myeloma cells that remain after treatment, we are redefining a cure!
MRD-Zero™. Remember that phrase. It means no Minimal Residual Disease, or MRD. With new testing capabilities, that’s how we’ll be defining a cure.
We have launched a new website at blackswan.myeloma.org to let patients know when and how they can participate, how supporters can donate, and how everyone can follow our progress.
Long-term remissions with good quality of life remain the hallmark of myeloma treatment. But we hope you are as excited as we are about bridging the gap from remission to cure in the first cohort of patients – all because we were willing to imagine a black swan where no one had seen one before.
Resisting the urge to examine all of the amazing, hopeful things contained in this release until after you read some complimentary materials first on the IMF’s new dedicated webpages about Black Swan:
The IMF understandably doesn’t want me reproducing proprietary info from their Myeloma.org site. That’s OK. I can wait. And so you don’t feel rushed, please consider that your homework. Since I launched our “Fun Friday’s” series last week, I hate to scrap that before it even gains a following. So let’s agree to meet back here on Saturday. I will have the post up by 10 am Eastern Time; you can read my thoughts–and share yours–at your convenience throughout the weekend.
NOTE: To prevent any confusion, you may want to be careful if you google things like “IMF Black Swan” or simply “Black Swan.” Seems there is another prominent “IMF” on the world stage–it’s the “International Monetary Fund.” Google “Black Swan” and you may see a batch of disturbing photo’s and film clips of Natalie Portman, and the Academy Award nominated movie for which she won Best Actress a few years back of the same name.
There isn’t a lot of information about the initiative out there yet, except on the IMF’s new site. Best I can tell, the Myeloma Beacon and major newspapers have been slow to jump on this swan’s back, too. So at least I’m in good company. Like a number of other things associated with the project, you may need to come to your own conclusion as to why that is.
So let’s share some well deserved fun tomorrow–but don’t forget to do your homework for the weekend!
Feel good and keep smiling! Pat