Pre-games, previvors, and pre-death: My TEDMED talk on what medicine can learn from Moneyball
That’s me with one of my favorite artists, Jill Sobule — and her mom! — backstage at TEDMED (courtesy TEDMED)
In April, I was given the chance to speak at TEDMED 2012, a remarkable gathering of health care leaders, patients, and entertainers, among others, in Washington, DC. It was, as my friend Scott Hensley of NPR put it:
…a way for people who care a lot about health care to get together and make some headway on thorny problems.
In other words:
The smart kids from the cafeteria have grown up and become cool, a geeky kind of cool.
In short, it was a non-stop smorgasbord of ideas, inside and outside of the Kennedy Center auditorium.
TEDMED has just posted the video of my talk, which you can watch below (post continues afterward):
I was very pleased that a number of blogs and news outlets broadened the discussion by writing about the talk. Here’s a sampling:
- Addiction Inbox, “Ivan Oransky on the disease model at TEDMED 2012“
- The Atlantic online, “The preposterous epidemic of pre-diseases“
- The Irish Times, “We all have a fatal condition: it’s pre-death“
- NPR’s Shots blog, “TEDMED takes its big health tent to Washington“
- Scientific American online, “TEDMED: Tougher topics to chew on“
- Time online, “How the power of self identity affects your health“
I’m asked to speak on medical journalism and scientific integrity frequently, but giving a TEDMED talk is something quite different. The format requires a different level of preparation, and TEDMED’s high standards push speakers out of their comfort zones in a really good way. I’m grateful to TEDMED’s Marc Benerofe, Lindsay Potter, Lisa Shufro, Jay Walker, and Marcus Webb for the opportunity, and for sage advice as I crafted my talk. And I also want to thank Denise Graveline, whose advice and suggestions were invaluable, as always.
I look forward to more conversation, and feedback.
Please see a new post on this subject, in response to criticism from FORCE, the group that coined the term “previvor.”
The Oransky Journal 
Dear Ivan-
With an 85% chance of developing breast cancer in my life time due to being a carrier of the BRCA 2 mutation, I call myself a “Pre-vivor”. I have a sense of humor and am glad we were able to provide you with a punchline in your speech at TedMed, but make no mistake: Our risk is very real, and after watching one too many family members suffer a horrific death, I opted for a prophylactic mastectomy. While there is no way to remove 100% of my risk, I am still at a lesser risk than someone who does NOT have the mutation. So while I am sure that there are tons of medical scams out there that prey on people who do not do their research, know that OUR risk is very real. I only hope that there were no women in the audience that may actually be at risk for hereditary breast and ovarian cancer who took your joke as a truth said in jest. Otherwise you could be totally responsible for them not testing, and not taking the opportunity to take preventative measures should they be at risk. Kind of irresponsible, no?
Sincerely-
Suzanne Citere
(one of five women featured in the book “Previvor: Facing the Breast Cancer Gene and Making Life Changing Decisions”, and lifelong Met fan.)
Suzanne Citere
June 12, 2012 at 7:56 am
Thanks for the comment, Suzanne. I hope you’ll read my response to the issues you and FORCE have raised: https://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/
ivanoransky
June 12, 2012 at 10:25 am
I am absolutely floored by your opinion on Previvors. I have lost My Mother and Aunt to breast cancer and my other two aunts are survivors. My genetic factors come into play. I am BRCA2 positive. If it were not for the increased screening at my “early” age they would not have found two tumors. I am not alone in this, I have 5 friends between the ages of 25 and 35 that all have Breast Cancer, 2 are BRCA carriers. Your opinions about prevention are ridiculous.
Devin Greene
June 12, 2012 at 12:52 pm
“Should we let it go by and not swing…”
I am wondering where is the completion of this thought. Where do you believe BRCA genetic testing and preventative medicine for BRCA carriers fits into this metaphor? Is BRCA testing the beginning of that slippery slope or are the preventative options offered to these women a failure of our medical system?
As a genetic counselor, if I were to continue this crude metaphor, BRCA testing is a fastball right down the middle. Women who test positive are at 50 to 80% risk for breast cancer and are at an up to 45% risk for ovarian cancer. Based on these risks, if two women choose to have a risk reducing mastectomy, then you would prevent 1 breast cancer. That’s one woman who avoids chemotherapy, one woman avoiding radiation therapy, one woman avoiding lymph node dissection and possible lymphedema. A very simple cost benefit ratio would show that it’s worth it.
While screening for breast cancer is reasonable successful, ovarian cancer screening has not been proven to be successful at detecting ovarian cancers when they are most treatable. Ovarian cancer is one of the most deadly cancers if not diagnosed at an early stage. BRCA positive women can choose an oophorectomy. Never mind the cost benefit ratio (mainly because it is absolutely no contest), IT SAVES LIVES! Say what you will about pre-anxiety or pre-diabetes, this is the absolute height of success of preventative medicine.
Imagine, being able to identify those who are at highest risk of developing the most deadly disease and being able to prevent them before they even begin. Talk about a homerun!
For those women who do escape the same fate as many of their ancestors, they are left with a term, “previvors”. That’s their reward for electing a surgery that for some, might be unnecessary, and for others, save their lives. The term does well to accurately describe their condition, their process to make a difficult decision to remove one or more body parts that are perfectly healthy (or as some suggest, a ticking time bomb). Few healthy people will ever be at such a high risk for developing an illness. I applaud any BRCA positive woman who undergoes such a surgery, not because it is necessarily the right choice but it is the right choice for them.
Having seen many TED lectures, I typically find them quite forward thinking. In this case, sadly, I found this lecture to be a curve ball in the dirt.
A genetic counselor
June 12, 2012 at 9:50 pm
Dear Dr. Oransky,
Your recent TEDMED talk inspired me to write this post on my own blog: http://janethewriterwrites.blogspot.com/2012/06/my-three-names.html
I believe that you have done a gross injustice to the HBOC community, and I am pleased that so many of us are telling you so.
JanetheWriter
June 14, 2012 at 11:22 am
Jane, thanks for your feedback, which I very much appreciate, and for taking the time to blog about this and share the link. For my part, I’m pleased that this discussion about medicalization has been so productive, here and in other venues.
ivanoransky
June 14, 2012 at 6:46 pm
I also think you owe the hereditary breast and ovarian cancer (HBOC) community an apology. (By HBOC, I’m talking about women with a BRCA mutation but also women with significant family history where no mutation has been identified).
In your talk you belittle the significance of HBOC when you say it is “just a risk factor” and poke fun at those of us having to make difficult decisions in order to avoid the fate that other women in our families have met. Just to reiterate, women with BRCA mutations can have as much as a 9 in 10 chance (87%) of developing breast cancer, as much as a 1 in 2 chance of developing ovarian cancer… I imagine if you were a woman with a BRCA mutation and all of the women in your family with the mutation had died in their 40′s, you would also consider surgeries or increased surveillance in order to be around for your kids to grow up…
With your position, you should educate the public on this issue and the seriousness of BRCA mutations, rather than make it seem like a silly thing to be concerned about. I think you owe us all a public and formal apology rather than changing your “stance” to say it is all about the definition of “previvor”.
CBL
June 15, 2012 at 9:40 am
Please read… http://slbarto.blogspot.com/2012/06/just-because-you-have-voice.html
Sara
June 15, 2012 at 3:22 pm
I sincerely hope that no one you love gets voted “off the island” as so many in my family have. What a cruel way to get a laugh. Shame on you. Take issue with definitions all you want, but don’t make jokes about a very real condition. I didn’t sign up for this BRCA mutation, but thanks to FORCE I am finding ways to deal with it.
84% chance of being voted off the island
June 16, 2012 at 6:16 pm