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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