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?