34158_404238872894_676934_n[1]

Thoughts on a Certain TED Talk, FORCE & the “Previvor” Label

Are you familiar with TED talks?

In case you’ve never heard of them, TED talks are video recordings of presentations one can tune into on the internet to hear someone discuss (supposedly in a fresh or entertaining way) just about anything you can think of. I rarely watch them. Frankly, I don’t have the attention span patience to stay tuned into videos online that last more than a couple of  minutes.

This being said, after reading a post last week by one of my blogging sisters at Women with Cancer about a TEDMED talk she had tuned into, I had to as well as the subject was one that touches me personally.

This particular TEDMED talk was one given in April of this year by Ivan Oransky, MD, director of Reuters health, who also happens to be a journalist. In a nutshell, his talk was about our society’s tendency to obsess about pre-conditions and to over-medicalize everything from A to Z.

He did make some very valid points.

There do seem to be a lot of pre-conditions we’ve come up with such as pre-dementia, pre-hypertension and pre-anxiety. He went on to say sub-clinical conditions have been “created” by both medical and pharmaceuticals such as osteopenia, a pre-osteoporosis condition. Going even further, he stated we’ve “conditionalized” normal phases in life such as puberty, pregnancy and menopause. I can’t argue with these points. He’s right. When you think about it, we even conditionalize the entirely normal human process of aging.

A main component of his message was if we medicalize everything and create conditions, naturally it follows we want to fix them. More and more conditions require more and more drugs to treat them. Dollars and profits come in to play here, lots of dollars and huge profits. Again, I agree.

Over treatment is very real.

Going with Dr. Oranksy’s baseball theme, about mid-way through his talk was when he struck out.

He casually joked that we all have a universally fatal pre-condition called pre-death and if the audience made it to the end of his talk, they could all call themselves previvors, clearly mocking a term many take very seriously. Strike one.

The audience laughed. Others didn’t find it quite so amusing for reasons I’m getting to.

Dr. Oransky seemed to cross a line when he went even further by going after a certain organization which coined the term previvor. Strike two.

This organization is FORCE.

FORCE stands for Facing Our Risk of Cancer Empowered and was founded to help those facing hereditary breast and ovarian cancer. It is the primary national resource for people who carry the BRCA1 and 2 gene mutations, but its umbrella also includes anyone whose family history seems to suggest something is going on in their genes.

FORCE did coin the term previvor.

I must admit I have never been entirely comfortable with the term previvor. This is probably because I shy away from most labels, including the survivor one.

However, I do understand the desire some have to “wear” labels including the previvor one

I wasn’t so much offended by Dr. Oransky’s remarks about the term previvor.

What offended me more was his cavalier attitude. Strike three.

It felt to me as if he included the term previvor in his talk mostly for show. It made for a good “buzz word” and it did create a fair amount.

Dr. Oransky feels the term previvor is too broad and he also seemed to imply that too many people are “huddling under the FORCE umbrella.”

He stated directly in his talk the following:

“We have advocacy groups like the one that’s come up with previvor (FORCE) who want to make more and more people feel they’re at risk or might have a condition so that they can raise more funds and raise visibility.”

The implication made that BRCA people (and those with strong family history) are over-reacting and choosing drastic measures to prevent cancers they may or may not ever develop and the slap (intentional or unintentional) he gave FORCE upset a lot of people and rightly so.

Does a BRCA mutation mean you will definitely get cancer? Of course not, but your odds are greatly increased.

I speak from experience on this one.

Are BRCA people choosing drastic measures?

You bet your life they are and they aren’t making these drastic decisions lightly.

Many have seen loved ones stolen by cancer time and time again in their families. Many are choosing prophylactic mastectomies and oophorectomies because they know all too well what the odds say they may someday face if they do not.

Does having such drastic procedures done mean the person will never get cancer?

Obviously, the answer is of course not. Life has no guarantees.

But life is a juggling act.

When you’re BRCA+ or have a strong family history of cancer, it sometimes feels as if you are juggling with lighted torches or sharply pointed daggers.

We don’t always know if we are making the right decisions or not, but we gather information, try to make sense out of the confusion and then make tough choices.

All we ask is that our choices be respected, including what we choose or do not choose to call ourselves.

Perhaps this is why you offended so many, Dr. Oransky; you were not respectful.

None of us, but especially those of us with genetic mutations or strong family histories of cancer are as you said, “swinging at every pitch.”

No, we are merely trying to “level the playing field” a bit.

Ridiculing FORCE, a leading organization helping us to do so, was a poor decision on your part.

You struck out on this one.

Have you ever tuned into a TED talk?

Do you believe we “over-medicalize” or have too many pre-conditions?

Are you familiar with FORCE?

Do you feel Dr. Oransky was out of line in singling out FORCE?

 

 

 

16 thoughts on “Thoughts on a Certain TED Talk, FORCE & the “Previvor” Label

  1. I do feel we over-medicalize, but then again, I grew up with a hypochondriac father and practically lived in doctors offices until I left for college. I was constantly sick until I left for college (funny, huh?). My sister has serious special needs and is constantly on antibiotics for so much as a sniffle.

    I don’t like labels (ESPECIALLY survivor…that one truly grates on me), but it’s more that I don’t like them arbitrarily slapped on. If one *chooses* to label him or herself, that is a totally different story. I can’t argue with another’s choice but DON’T label me.

    Honestly, there are so many things out there we could be prone to…and so many things besides cancer that could kill us. Unless I actually have something, I can’t worry it to death. Heck, even then I can’t worry it to death. My worrying would just distract me from living and could end my life far sooner than said issue.

    1. Jen, There’s no question we do over-medicalize and over treat. But placing BRCA people in this category was not a wise choice. And as for labels, well you probably know how I feel about them. Labels are fine for those who want to “wear” them. Thanks for your comments.

  2. Really good post on this tricky subject, Nancy. I agree with some of his basic points about our healthcare system. We have way too much conditionalizing. Sometimes cramps are just cramps.

    But he went FAR over the line holding up previvors as the worst case example. Facing one’s very real risks honestly is hardly over-reacting. He’s definitely out of the game on this one.

  3. Thanks for writing about this, Nancy. You have a perspective that’s essential.

    There’s no doubt our society has vast numbers of “the worried well.” But I don’t put women with BRAC mutations in that category. Neither would Dr. Oransky as he said in later comments. Who was backtracking on the definition of the word previvor?

    Was he ridiculing FORCE? And the word previvor?

    I call it a foul play.
    Jody

    1. Jody, I believe he was making fun of the previvor term which was coined by FORCE. He needed a buzz word to fit in with his talk theme and I think he chose poorly. Did he admit to making a poor choice in his later comments? From what I read, he didn’t. It was foul play for sure. Thanks for adding to this discussion, Jody. And thanks for writing your post on this.

  4. Nancy,

    Outstanding post on an important topic. I tuned in on Oransky’s talk after reading Jody’s great posting on the topic. Three strikes is right, Nancy! He was totally cavalier and disrespectful when discussing the term “previvor.” Does he know, or even care, that the BRCA mutations are serious, proven by science? Maybe he never actually confronted the prospect of him dying and having to make some gut-wrenching decisions quickly. He totally didn’t get it.

    Oh, and here’s another thing that pissed me off about his talk. He talked about osteopenia as a precondition that’s medicalized. As someone who used to have normal bone density and who now has osteopenia as a result of chemotherapy and aromatase inhibitors, I am incensed. I was put on Fosamax, and my bone density has improved dramatically.

    How is that bad? He doesn’t know the science. Like you, I agree with him about certain points, but he was way off the mark with many.

    1. Beth, I agree with you. I found his cavalier attitude to be the most troubling aspect. As a doctor, he should and maybe does know the science. He was trying to entertain, not really inform I guess, but I’m not sure this was the proper venue for that. And I’m sorry about your osteopenia resulting from chemo and the adjuvant drug therapy. I’m glad to hear you’re doing better on that front. He did make some good points, but sadly they got lost. Thanks for your comments, Beth.

  5. Thanks for your response, Nancy. The one question I had during the talk — and maybe I missed it — was what kind of doctor he was. He referred to himself as a journalist, which is odd if one is a medical doctor. Maybe he’s a doctor of journalism? Who knows?

    He did make good points. It’s a shame that he went off track.

    1. Beth, Good question. I do believe he is a medical doctor, but I’m not sure what his specialty is. And yes, he did make good points, but they got somewhat lost in the delivery. Thanks for stopping by again.

  6. Nancy, I agree about the three strikes. I’ve never tuned into a TED. At first I thought it had to do with NED, because there are so many initialisms for everything. I had heard of FORCE, but had not heard the “doctor’s” view. He shouldn’t presume to know what we “previvors” want to be called or make fun of the term. How insensitive! Maybe someone on his staff will read your post and the comments and become enlightened as to how we really feel. Thanks for all you do. xx

    1. Jan, In this case the doctor was pretty insensitive to go after an organization that helps people with scientifically proven genetic pre-dispositions to cancer. He was off the mark on this one. Thanks for stopping by. It’s always great to hear your thoughts.

  7. Dr. Oransky should have followed the old adage, “Better to keep your mouth closed and be thought a fool than to open it and remove all doubt.” What an insensitive, so does not “get it” jerk. Thanks to you and Jody for calling attention to this boob!

    1. Brenda, He actually had a good theme and his talk about over-medicalization raised very valid points. However, his choice to single out FORCE was way off base. Thanks for sharing your thoughts.

  8. Nancy, I was also taken aback by this particular TED talk, and this is coming from ME, a medical sociologist who studies medicalization and believes (from everything I’ve researched and observed) that medicine has indeed stretched its tentacles into almost every aspect of our lives, and not always in positive ways.

    That said, I hear you on those three strikes. Oransky was off base (to stay with his sportsmanlike theme) in using examples he clearly did not know enough about. While I can’t speak to his motivations in choosing these examples, they did seem to be used for comedic purposes rather than to provide concrete illustration of the theory he was trying to discuss. Looks like he’s OUT.

    –Gayle Sulik

    1. Gayle, I do think he made a bad choice for comedic purposes. I also think deep down he realizes this, but doesn’t want to back-track or apologize for whatever reason. That means, he struck out. Thanks for your comments, Gayle.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>