What does $750 billion in wasted spending look like?

Here is an infographic (I know) from the Institute of Medicine who just released this report. According to it, we are wasting $750 billion annually in unnecessary healthcare costs, and here is the breakdown. Note the ~$250 billion on overdiagnosis and overtreatment. Now,what are we going to do about it?

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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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Healthfinder.gov: Education or indoctrination?

Ever heard of healthfinder.gov? It's a web site from the US Department of health and Human Services

...where you will find information and tools to help you and those you care about stay healthy.

Sounds like a laudable goal, right? Great! Now, help me! Here is the "help" that I found when I went to the page called "Colorectal Cancer Screening: Questions for the doctor":

What do I ask the doctor?

It helps to have questions for the doctor written down ahead of time. Print out these questions and take them to your next appointment. You may want to ask a family member or close friend to come with you to take notes.

So far so good. But here is the list that follows:

• What puts me at risk for colorectal cancer?

• When do I need to start getting tested?

• How often do I need to get tested?

• What screening test do you recommend? Why?

• What’s involved in screening? How do I prepare?

• Are there any dangers or side effects involved?

• How long will it take to get the results?

• What can I do to reduce my risk of colorectal cancer?

Note the wording: "When do I need to start getting tested?" "How often do I need to get tested?" And these "needs" come well before the "why?" In fact, the "why" never really comes. The oblique "why" about which test is recommended is too little too late. The real "why" is why, or even whether, I need to get tested in the first place. I am happy to see a question on the dangers of screening, but again it leaves plenty of room for the clinician to minimize and patronize.

The list of questions is built upon one (erroneous) assumption: Everyone is bound to perceive the risk-benefit equation of colorectal cancer screening the same way. We know this is false, and each person needs to make an individual decision based in what we know today and according to the values he/she places on the outcomes. The way the questions are written, they simply reinforce the bullying attitude of the screening bias, making those who swim against this tide feel irrational and unreasonable. But may I point out that some of us spoke out against universal mammography screening even before it became the main-stream recommendation? So perhaps there are good reasons to be more cautious with screening for everything, even colon cancer.

Science evolves, our knowledge evolves. What we think we know today will be modified tomorrow. I take a strong exception to this dogmatic and one-sided formulation of how to have a discussion about testing whose risk and benefit profile may not (and should not) elicit the same unbridled enthusiasm from everyone. So please, healthfinder.gov, rethink your "helpful" questions so as to educate, rather than indoctrinate.

Hat tip to @DCPatient for pointing me to this page  

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