An issue affecting the breast cancer community came across my desk yesterday. Take a look at this talk by Ivan Oransky, MD, director of Reuters health, that was posted on Gary Schwitzer's Health News Review June 6. It’s a puzzling talk about overtreatment and medicaliazation that takes a surprising turn toward the end.
Medicaliazation is just what it sounds like - taking normal life processes like menopause, and building its symptoms into a 'condition' that pharma then develops medications to treat. Medicaliazation leads to the television and magazine ad campaigns you know and love. My favorite is the perky Sally Fields, of "YOU LIKE ME" Oscar fame, waxing rhapsodic-ally about Boniva, as though taking biophosphonates were as easy as having a picnic with the grandkids. They aren't.
In his talk Dr. Oransky points out approximately 270 women have to be treated for three years with biophonates to prevent one bone fracture, a fact I was glad to know but not necessarily a stunning example. Some better ones are described in Otis Brawley's book, How We Do Harm: A Doctor Breaks Ranks About Being Sick in America. His discussions of well-insured cancer patients being treated with "the latest and greatest" (expensive) chemotherapy drugs in private clinics will curl your toes. That is overtreatment. It is overtreatment when patients demand unproven therapies and physicians, who don't want to lose that patient to someone else, acquiesce. Prescriptions are written. There are a number of yearly lab tests for otherwise healthy adults that are now considered to be excessive. These are the examples of medical excess that clog the financial arteries in our health care system.
But then suddenly, and I can only conclude deliberately, since this was a Ted talk and not an impromptu chat around the water cooler, the word previvor became part of the conversation.
That Dr. Oransky finds some "pre-conditions pre-posterous" is not a point of contention to me. I get that. Journalists, as he points out, medicalize different risk factors all the time. You can read those daily on any news aggregator and worry yourself sick. Some of the conditions Dr. Oransky cites, like subclinical acne (um, the absence of pimples in case you were wondering) are funny. Who needs navel gazing? As a woman who has had cancer - that uninvited, sudden and disruptive guest – my own patience with disease mongering is nonexistent.
But I don’t personally group navel gazers, medicalizers, hypochondriacs (might as well say that, too) or the “worried well” in the same category as women at risk for hereditary breast and ovarian cancer. No way. Some call it “hereditary breast and ovarian cancer (HBOC) syndrome. That is distinctly and completely different. Notice that I also didn’t include the word previvor, coined by the advocacy group FORCE, in my distinction, for reasons I hope to make clear.
No one is destined for cancer and everyone, by nature of being alive, is at risk. The only sure risk factors for breast and ovarian cancer for those without a mutation are: 1) being a woman with both breasts and ovaries and 2) growing older. From a medical standpoint, since 'pre' means before, does the word previvor denote the fact that cancer is in fact, inevitable? As Dr. Steve Tucker pointed out yesterday on Twitter, a mutation in one's DNA does not a disease state make.
Not everyone who has a BRAC1/2 mutation will develop breast cancer, but a good percentage of them, over the course of a lifetime, will. That number ranges from 60%, or five times the risk as that of the average woman, according to NCI. Cancer.net lists that risk in a range from 50 – 80% and Myriad Genetics, the company that holds the patent on BRAC testing, lists the risk factor for breast cancer from 56-87% (before age 70) on its website bracnow.com.
If the point of the talk was not to take issue with the women who carry this deleterious mutation, whether they call themselves previvors or WWDM (women with deleterious mutations), it wasn’t readily apparent to me when I watched the clip. In the conversation that resulted on blogs, however, and not the Ted Talk itself, Dr. Oransky later wrote, “The problem is that there are hardly any people alive who do not have ‘some other predisposing factor’ for cancer, which makes FORCE’s definition far too broad to be useful. That was my point.”
Well, true enough. We can begin to split hairs all day long. It seems that the phrase “some other predisposing factor” is the issue.
Is an organization that supports women with a heightened risk for cancer, as defined through genetic counseling (which FORCE recommends) disease mongering? Of all the nonprofits out there with curious agendas this is not one I would have chosen. The irony to me is how a group working proactively to grapple with and reduce their risk factors for cancer is held up in the spotlight in the first place. There are any number of nonprofits chronicled by breast cancer advocates that are far more slanted in their approach and promotion of mammography as the end all to be all, even though experts will tell you privately that if a mammogram isn’t digital you might as well not even have one.
This TedTalk, and the conversations that came my way have given me much to think about. So you understand what I’m talking about here, I encourage you to the listen to the talk. Here are the words that stopped me cold:
“The good news is if you can survive to the end of my talk … you will be a previvor (audience laughter). Now, I made up pre-death….I didn’t make up previvor. Previvor is what a particular cancer advocacy group would like everyone who just has a risk factor, but hasn’t actually had that cancer, to call themselves. You are a previvor. We’ve had HBO here this morning, and I’m wondering if Mark Burnett is anywhere in the audience… I’d to see a reality TV show called Previvor. Anyone who gets a disease is off the island.”
Disease mongering is one thing. Holding up an advocacy group for ridicule? Whether intentional or not? You decide.
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Additional links: http://theoranskyjournal.wordpress.com/2012/06/05/pre-games-previvors-and-pre-death-my-tedmed-talk-on-what-medicine-can-learn-from-moneyball/
I am compiling additional posts and will add them here. Right now it's late Wednesday evening, and I have more work to do. We've just learned that Susan Love, MD announced a diagnosis of leukemia. In l998 when I was diagnosed, her book on breast cancer was my guidebook. I wish her all the best and am grateful for her continued advocacy on the behalf of women with breast cancer.