Wednesday, June 13, 2012

A FORCE against disease mongering

Have you been over to The Oransky Journal lately? If not, go and see what is happening there. What is happening is a microcosm of the larger debate we are having about detection and diagnosis of real disease versus overdiagnosis of phantom conditions whose treatment is worse than anything that the potential disease may deliver.

The issue is as follows. In his talk at TEDMED in April, Ivan gave an excellent and measured presentation about the folly of pre-disease classifications and the harm they can bring. As my readers are well aware, this is the subject of great interest to me -- after all, it is a travesty that contact with the so-called "healthcare" system is the third leading cause of death in the US, and that overtreatment costs us at least 10 cents of each healthcare dollar, and probably much more (you will find a slice of my posts on this issue here). So, Ivan's talk was timely and cogent.

After he posted the talk on his blog, he received a letter from a group called FORCE (Facing Our Risk of Cancer Empowered) who, as it turns out, coined the word "previvor," one of the many words Ivan used to illustrate the philosophy of disease mongering. The letter voiced a vigorous objection to Ivan's use of the word to "misunderstanding" its meaning. But what really happened?

Apparently, "previvor" defines a group of people who are at a heightened risk for cancer, but have not yet been diagnosed. It seems that the majority of FORCE's constituency consists of women with the BRCA gene mutations, which put them at an extraordinarily high risk of several cancers, most notably breast and ovarian. Moreover, these cancers tend to occur at an early age, and are generally quite a bit more aggressive than those not associated with these mutations. We are not talking a trivial rise in the risk either; BRCA1, for example, raises one's lifetime risk for breast cancer to about 80%! To mitigate this risk, many women with these types of mutations undergo prophylactic mastectomies and oophorectomies. These are life-changing events, and their genetic make-up hangs like a Damocles' sword over the offspring of these women as well. So, what's the problem with using whatever word suits them?

The issue is the group's definition of this neologism "previvor." As quoted in Oransky's post (italics mine):
“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.
So, the definition is quite broad, as you can see, especially the "some other predisposing factor." Who doesn't have one? Just by virtue of being alive we have predisposing factors to many diseases, including cancer. And aging is one of the strongest predisposing factors to cancer as well. The concern is that a broadly defined term like this plays right into our national paranoia about our health and our enthusiasm for screening as the primary mode of prevention. And if you really don't feel well informed about why screening is not all it's cracked up to be, I urge you to dig through the annals of this site thoroughly (if you don't have much time, you can get a solid primer on the issue from my book). In my view, given the extent of the harm from overdiagnosis and overtreatment, Oransky's call-out of this word in the ultra-visible forum of TEDMED was a public service.

And indeed, it turned out this public service has gone well beyond just delivering the information. The discussion that ensued over the last couple of days with FORCE has shown what this organization is made of. An 80% lifetime risk of breast cancer is a grave matter, and the group is an important force in advocating for these patients and supporting their families. But as it turns out, it stands for even more than that. I commend Dr. Friedman, the Executive Director of the group, for being open to narrowing the definition of the term "previvor." This willingness signifies a real desire to do the right thing not only for her constituency, but also for the public at large. Even more, she should be proud that her organization is taking a stand against disease mongering.

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10 comments:

  1. If Oransky's presentation was "excellent and measured" why did he belittle previvors? Why did he accuse FORCE of being in it for the money? If you understood what it means to be a previvor, you woud take offense to this presentation too.

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  2. Lee, thank you so much for stopping by and commenting.

    I do think there is a distinction between belittling an overly broad term and belittling women who are at a grave risk for cancer, as I said above. I really do not believe that our views are far apart at all. As I said in my comments to the original post and above, the work FORCE is doing for people with an astronomical risk of cancer is phenomenal. But I also live in the world where every pimple on a healthy person MIGHT be something that kills, even though this is highly improbable. We are really talking about two different things, aren't we? In fact I think that it is in FORCE's best interest to narrow the definition, so as not dilute its mission and not to be misunderstood, as Dr. Friedman felt had been done.

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    1. Marya, your comments are thoughtful and balanced even if you are using this debate to promote your book and get donations for your for-profit group. I am a BRCA 2 carrier with Stage IV breast cancer, so I am sure you understand why the points raised by Dr. Oransky might rankle me. Might it not belittle women to pitch a new reality show called "Previvor" where contests are asked to leave the island when they get cancer? The fear and despair of women like me was used to get a cheap laugh from his audience. I am not only leaving the island, I am leaving my whole world behind as soon as my very aggressive cancer outsmarts currently available treatments. My children, siblings, nieces and nephews will turn to FORCE to navigate their own horrific journey through genetic counseling, genetic testing, and possible starring roles on that great new TV hit "Previvor." It's a shame I won't be around to see it.

      Yes, let's rally to change the definition of "previvor" because that will fix what's wrong with health care in America. Then we can go back to eating fatty foods while gulping our Lipitor and watching my loved ones compete on Previvor. Last one to get cancer wins!

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    2. Dear Anonymous, I really appreciate your raw and honest comment. I guess the most that can be said is that no one set out to make fun of or belittle the tragedy of BRCA-related cancer. The definition of "previvor" that is on FORCE's web site leaves a lot of room for misclassification of others into the category, and this is the object of the current discussion. I am sorry that you feel slighted by the comment, but it was certainly not aimed at you or others in your situation.

      The larger world of healthcare in the US abounds with disease mongering, and the public is all too easily led astray by it. This is why definitions are important. This is why I spend so much time and energy talking about this stuff. This incident itself is proof of the over-reach of the current definition.

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  3. This is fascinating, thank you. I am still planning to write a review of your book (and I am really enjoying reading it.) I think the issue of risk factors being treated as diseases in and of themselves (and the wide variety of difference in the degree of significance of various risk factors - like risk conferred by the BRCA gene vs. moderate alcohol intake, for example) is really important to talk about and critique. Obviously it's a really emotional issue for people as well.

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    1. Michelle, yes it is, and should be, an emotional issue. The thing to remember is that the word was not used in malice to belittle a terrible situation. To think that is to make us all out to be sociopaths, which I hope we are not. Definitions are important: if not checked, we have seen them encroach on all areas of our lives. Thank you for stopping by and commenting. Looking forward to your review.

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    2. I don't think the increased surveillance and prophylactic surgeries associated with hereditary cancer (and others with predisposing factors) are any sort of "epidemic". While you and others may take issue with the inclusive definition of 'previvor' it applies to a select group of women who face difficult medical choices. Perhaps that is the part of the definition that needs clarification rather than "other prediposing factors". There is no epidemic of women choosing to have "healthy" body parts removed due to an overly broad definition. Rather, there are women with known and unknown mutations that confer extreme risk, women who have had chest radiation for leukemia who now face the same risk and prophylactic surgeries, and other minority groups who face these very real risks due to something much less popular and identifiable than a BRCA mutation. The purpose of the broad definition is to provide support and inclusion to at risk women who may be in other ways marginalized. FORCE is after all both a SUPPORT and advocacy group.

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  4. Hi Marya,

    A bit off topic, but I would like to know when the kindle version of your book will be available. I am looking forward to reading it.

    Thanks

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    1. Diana, it should be out in a couple of week. Thanks.

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  5. Marya~ Don't fall for the new "issue" Oransky has with Previvors...listen again to his TEDMED speech - if it was truly the "definition" he took issue with, why was this NEVER mentioned?? It is only now, now that he has been educated on what the word previvor means...now that he has realized how crass his jokes were...now that the previvor world has come to his doorstep trying to understand why our genetic mutation is so humorous to him. Please read… http://slbarto.blogspot.com/2012/06/just-because-you-have-voice.html

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