Evidence & Economics, Emotion & Entitlement:The Politics of Proof in the Current Breast Cancer Debate

Eric Dishman

I am not a breast cancer expert. Nor are the majority of you who are reading this. Nor are the hundreds of millions of Americans witnessing the media- and partisan-fed furor over the change in guidelines about breast cancer screening for women between 40 and 50 years of age. I’m pretty sure no one in Congress is a bona fide breast cancer expert. For that matter, neither are most physicians or nurses. And I’m willing to bet that most, if not all, of the news and radio personalities pontificating and practicing “armchair medicine” about breast cancer on the airwaves are untrained in advanced oncology or health outcomes research. Which is why someone–in this case the committee of actual breast cancer experts convened by the U.S. Preventive Services Task Force (USPSTF)–has to take on the challenge of researching, analyzing, and updating recommendations for the screening of breast cancer and hundreds of other conditions, tests, and therapies.

So what’s the news? Based on new studies and analysis, the USPSTF experts have updated their 2002 recommendation about when women should begin regular mammography screenings (you can read it verbatim here). Specifically, it says:

“The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms.” The AHRQ website then goes on to provide a well-reasoned explanation of the scientific and medical studies that led the committee to come to this conclusion.”

My non-expert reading of their report leads me to conclude that, frankly, the mammography tests for women at that age are pretty inaccurate (there is a high number of false positives), and we are putting a lot of women through tests that have high emotional and economic costs with much risk for very little reward. But the report clearly says this decision should be an “individual one” and “take patient context into account”–in other words, it doesn’t prevent women and their doctors in any way from deciding to have a mammographic screening for their personal healthcare history and situation. I found this advice from the Susan Komen Breast Cancer Foundation to be a wise and reasonable response:

“How should women respond to this news? Calmly. There has always been debate about whether or not to recommend routine screening mammography for women in their 40s. The focus of the debate is the balance of risks and benefits. The most important potential benefit of screening mammography is a modest reduction in breast cancer mortality. Potential risks of mammography include false-positive test results (which lead to stress and additional testing), false-negative test results (a missed cancer), and overdiagnosis. Overdiagnosis refers to the diagnosis of a cancer that will never cause health problems during the life of a patient. Overdiagnosis leads to unnecessary cancer treatment.”

So if this is simply a routine update–though it does reverse the recommendation compared to 2002–based on new scientific evidence, and everyone still has the freedom to choose mammography in consultation with their doctor, how has this created such a firestorm? The problem is that these new recommendations–having emerged at a critical moment in healthcare reform as the House version has passed and as Senator Reid is launching debate of the newly minted 2000 plus page bill in the Senate–are being politicized to try to influence the controversial bills being voted upon. Sadly, I think this controversy has far less to do with cancer and care for patients and much more to do with politics and quests for power. It is much more about the “politics of proof” for how we decide which medical devices, tests, and treatments are effective and which ones really aren’t worth the effort. Thus, hidden behind this debate about cancer is really a political fight about what is called Comparative Effectiveness Research (CER) and the large amount of tax-payer money to pay for it.

Comparative Effectiveness Research (CER) is a political hot potato that most people don’t understand, if they have even heard of it. The stimulus package put $1.1B into the CER program (see this link for more info) with $300 million going to the Agency for Healthcare Research and Quality (from which the USPSTF that produced this breast cancer report is managed), $400 million to the National Institutes of Health, and $400 million to the Office of the Secretary of Health and Human Services to “conduct, support, or synthesize research that compares the clinical outcomes, effectiveness, and appropriateness of items, services, and procedures that are used to prevent, diagnose, or treat diseases, disorders, and other health conditions.” In other words, these dollars will be used to help inform patients and providers which treatments, interventions, therapies, and clinical practices achieve the best results for people and under what care models. There is a federal coordination Council to oversee this initial stimulus investment, and the healthcare reform bills are very likely to create a nonprofit corporation and ongoing funding mechanism of $1 per patient each year from both Medicare and private plans to sustain CER for the long haul.

Anytime you start talking about sums of money this large, politics inevitably comes knocking on the door very quickly. First, there is a political tussle within the government to see which of these agencies, if any, will ultimately end up controlling the CER funds and research agenda. John Inglehart recently published an overview of the Institute ofMedicine’s recommendations for CER in the New England Journal of Medicine, which helps to further explain all of this and to give examples of the kinds of questions this research would pursue. Second, CER has become a partisan wedge by which some politicians claim that this will lead to government rationing and the removal of choice for patients. Third, there are some healthcare and medical industries who are resisting CER because they fear that a particular drug or medical device–particularly “higher end” or “premium” versions–may be deemed by the research to be incrementally unnecessary or ineffective when placed under this kind of comparative scrutiny. For example, does some new blockbuster pain drug really deliver improved health benefits over the “old” drug?

To me, Comparative Effectiveness continues a common-sense tradition of evidence-based medicine that uses science and clinical trials to help doctors determine which treatments provide the best options for which patients. As a patient, I’m pretty glad we’re not using leeches to “cure” my flu bug anymore or exposing cancer patients I work with to dangerous and unnecessary amounts of radiation and chemotherapy like we did only a decade ago. Times change, technologies improve, researchers make new discoveries, and physicians change “best practices” based on the latest, greatest information. Yes, sometimes the experts prove to be wrong later on (and change their recommendations) and, yes, there are huge economic implications to this kind of research. But what is the alternative? To simply guess which devices work best? To continue to use outdated, ineffective, even dangerous therapies? To pay 10 or even 100 times more for some new intervention even though there is no evidence that it produces any significant improvement in health or recovery over cheaper, older alternatives? To put ourselves through often painful and emotionally-wrenching procedures when they may not even work?

Thus, some Republicans have seized upon this breast cancer controversy–and on the emotions of millions of women and families–as yet another reason to delay or stop healthcare reform, and, without most of the public even realizing it, to launch salvos on the Comparative Effectiveness programs that are already in the stimulus package. Out comes the “R” word again–“rationing”–with headline-grabbing, fear-fanning sound bites claiming that the federal government is going to do something bad to patients. I scanned six different cable channels this morning and heard the most preposterous claims from partisan pundits: from “this is the beginning of the end of Americans’ freedom to choose their medical care” to “the President wants to take away early detection of cancer to save money to pay for his expensive healthcare reform bill.” This kind of rhetoric that preys upon fears about cancer is immoral and, to my thinking, amounts to emotional terrorism that ends up hurting everyone in the long run.

At the same time, many Democrats have failed to seize upon this controversy as an opportunity to engage the country in very important discussions about the entitlements, expectations, and economics of healthcare. Simply put, the Administration has, once again, failed to lead on a such a complex, emotional topic, instead hiding behind technicalities, avoiding the political hot potatoes, and issuing ambiguous statements that hurt their own principles of CER and evidence-based medicine by distancing themselves from the panel’s recommendation. For example, Secretary Sebelius, on almost every channel this morning and in her recent press release says:

The U.S. Preventive Task Force is an outside independent panel of doctors and scientists who make recommendations. They do not set federal policy and they don’t determine what services are covered by the federal government….My message to women is simple. Mammograms have always been an important life-saving tool in the fight against breast cancer and they still are today. Keep doing what you have been doing for years — talk to your doctor about your individual history, ask questions, and make the decision that is right for you.

Yes, a doctor should ultimately be weighing these new facts in deciding what diagnostics to put patients through. But there is no political courage or conviction in these and other statements coming from many Democrats, as if some poll numbers or focus groups have left them afraid to tackle the real, hard issues around healthcare entitlements head on.

I hope and pray the President himself will use this breast cancer controversy as a way to start a thoughtful, nuanced dialogue with the country, even it if it is hard, complex, and politically unpalatable or unpopular. We, as Americans, have to face the hard facts that we all need to change our I-deserve-every-test-in-the-book attitudes if we’re going to save this country’s healthcare system and economy. We simply cannot afford to perpetuate and pay for healthcare treatments, tests, and practices that don’t work…or that themselves are risky without much reward…or that don’t work well enough to warrant paying for them. We simply cannot afford a smorgasbord approach to all-you-can-eat healthcare; we need to put our expectations on a diet. Smart, compassionate, evidence-based rationing of healthcare resources has been–and always will be–a necessary part of the care experience unless and until money grows on trees.

In doing cancer patient advocacy for the past two decades, I can promise you that these ethical and economic dilemmas come up all the time. And that most patients are very capable–in moments of calm consultation with their families, friends, and providers–to evaluate tradeoffs between treatments and tests, effectiveness, and quality of life. If empowered and educated, we all can (and should) do our own “comparative effectiveness” studies for our own specific healthcare situations. Dealing with cancer–or any major illness–can be a terrifying experience, and in the midst of those moments of panic about suffering or death, it’s easy to embrace the notion that we want to be treated by “any means necessary” and to live “at any cost.” But we have to balance those emotions and entitlements with the evidence and economics of care. And the sooner we, as a nation, can start to have a healthy dialogue about these hard, personal issues, the better off we will be. It’s hard to imagine healthcare reform producing any meaningful result if we don’t.