To Screen or Not to Screen, That is the Question

This post first appeared yesterday as a guest article in Xconomy.

Almost everyone knows someone who has had cancer. It is the disease that seems to strike the most fear in people’s hearts, in part because it seems to affect people so randomly. We all know that if we eat right, exercise and keep our cholesterol low we are less susceptible to heart disease, but cancer often doesn’t seem to care about such things as otherwise good health, which makes it especially worrisome.

In fact, cancer is the second leading cause of death in the United States. According to the American Cancer Society, about 562,340 Americans are expected to die of cancer this year, a number that equates to more than 1,500 people a day. Cancer is also among the costliest disease affecting our healthcare system. In 2009, the National Institutes of Health estimated the 2008 overall annual costs of cancer were as follows:

Total cost: $228.1 billion, comprised of:

• Direct medical costs (total of all health expenditures): $93.2 billion
• Indirect morbidity costs (cost of lost productivity due to illness): $18.8 billion
• Indirect mortality costs (cost of lost productivity due to premature death): $116.1 billion

Because of the high prevalence of cancer and the high cost of treating it, early detection has become the mantra of many people within the healthcare system. An incredible amount of private and public scientific, medical, and financial effort and resources has been poured into the creation of early screening and diagnostic tools for various cancers with a focus on finding them at the earliest stages and in the least invasive manner possible.

A recent Reuters article discussed research currently underway to non-invasively screen for lung, breast, bowel, and prostate cancers through a simple breath test. This “electronic nose” uses sensors to pinpoint chemical variations in the breath. The research team found they could not only distinguish between healthy and malignant breath but also identify the four different common tumor types from a simple breath reading.

In fact, this model of using breath to detect cancer has been studied before, as the California-based Pine Street Foundation has done numerous studies demonstrating that dogs can effectively sniff out lung, breast, skin and prostate cancers. Perfect solution: miniature sensor-sized dogs-now there’s a nifty way for household pets to pay for their own upkeep and a truly untapped venture opportunity.

In any event, the idea behind early detection seems intuitive: when you find cancer early it’s said to be easier to treat more effectively and less expensive to treat overall. This is the argument that is used to compel insurers and employers to pay for cancer screening and early diagnostic tests, particularly since there is evidence that late stage cancers can be as much as 10 times more expensive to treat.

As with all things in life, however, nothing is black and white. There appears to be a point at which the utility of early cancer detection may be outweighed by the disadvantages of over-testing. According to physicians at UCSF, a renowned institution in the cancer field, some cancers are being found “too early.” In the above-mentioned Reuters article, UCSF’s representatives state that “today’s cancer screenings can unearth tumors that scientists say never would have threatened the person’s life. The problem is that there aren’t surefire ways to tell in advance which tumors won’t be dangerous.” Adds Dr. Len Lichtenfeld, Deputy Chief Medical Officer at the American Cancer Society, “We’re really at a tipping point right now where we have a trade-off between the benefits of finding cancer early and the harms that are caused. We treat more patients than we know will benefit, we just don’t know who they are.”

Well that’s just great. What is a consumer to do? As usual, the answer is, “good question.”

This whole area is particularly contentious in light of the effort underway to reduce the cost of healthcare overall. Whenever the debate about cancer screening arises, particularly when it comes down on the side of “less is more,” both providers and consumers get pretty freaked out.

Remember last year when the U.S. Preventive Services Task Force recommended ending mammograms for women between 40 and 50 because those mammograms were deemed to be largely ineffective in screening for cancer and had significant negative side effects? Who would have thought that millions of women would rise up and demand the right to stick their breasts into what feels like a waffle iron if solid scientific evidence suggests that it may not be helpful?

Any attempt to limit cancer screening is generally met with the assumption that there is a vast conspiracy to withhold care to reduce costs. Even if that is true, and it probably is when you get right down to it, the intent isn’t always sinister. Tightening up the screening rules may also have some significant advantages to consumers. The big challenge lies in the lack of consensus, even among medical experts, about when screening is necessary and when the negative side effects (such as false positives and the resulting unnecessary additional diagnostic and treatment interventions) outweigh the benefits. In the debate over the appropriateness of mammograms for breasts that have yet to feel the effects of gravity, the American Cancer Society and the American College of Radiology pit themselves against the American College of Physicians and the National Women’s Health Network. If you’re the patient, how do you know where to cast your vote?

This area of medicine, like so many others, sits squarely in the environs of art vs. science. What the powers that be end up telling you is, “ask your doctor.” And yet, what if your doctor just doesn’t know the right answer? If they are advocates of both the American Cancer Society and the National Women’s Health Network, which team jacket are they going to wear?

One area that seems to be an obvious place to eliminate screening tests is among those people who clearly do not need them at all. For instance, government guidelines suggest that men over 75 shouldn’t bother with PSA tests, themselves controversial even for younger men. However, about 1/3 of men over age 75 do get PSA tests, despite the fact that these men rarely die from prostate cancer. A 2004 study found that nearly 10 million women had received Pap smears (the screen for cervical cancer) despite having had total hysterectomies (including removal of the cervix) for noncancerous reasons. Ok, that’s just lame. And it’s what leads to the charge that physicians overcharge the system to make money, in the same way that limitations on screening lead to the charge that insurers are just trying to ration care to increase profits.

Getting all of the medical societies to agree with each other, much less getting them to agree with the insurance carriers, on what constitutes appropriate screening rules is probably harder than getting a legion of cancer-sniffing dogs shrunk down to the size of a disposable breath sensor, the availability of miniature chihuahuas notwithstanding.

It is for this reason that enabling consumer access to meaningful health information at the point of care is critically important. The patient is a key part of the decision-making process whether they want to be or not. Here is the decision they are constantly forced to make: “Is my doctor right or is there another way?” There is usually no easy answer to that one and consumers feel frustrated by a lack of clarity about how to get a meaningful second opinion. Patients generally want to trust their physician, but when you are talking about taking a serious life-altering step to avoid the possibility of future illness, blind trust isn’t good enough.

Thus, I sincerely hope that the health reform efforts that lie in front of us spend as much effort on the area of improving patient decision support as they do on setting the rules for cancer screening. It has often been found that, when presented with appropriate and comprehensible information, patients make the less invasive, less costly treatment choice. Therefore, helping patients find the tools to make those choices effectively must be a priority in the implementation of health reform if we are to engage consumers in the national effort to improve the healthcare system clinically and fiscally.

There are some companies that have focused their energies around educating consumers about what types of screening are useful and appropriate and how best to differentiate between treatment alternatives while maintaining cost-consciousness. A good example is SeeChange Health, a San Francisco, CA value-based health plan that pushes this kind of information to its covered members in a highly personalized way in order to maximize wellness and minimize unnecessary cost.

Another type of example is San Francisco-based DNA Direct and its competitors in the personal genomics space. Think what you might about whether these companies have all the bugs worked out of their systems; at a minimum, the theory behind these organizations is right on point. By giving consumers detail about their own physical make-up and how that relates specifically to understanding one’s own risk of getting specific cancers and other diseases, companies like DNA Direct help consumers better understand their options so they can benefit from better-targeted diagnostic and therapeutic interventions.

The Patient Protection and Affordable Care Act (recently approved healthcare legislation) calls for a significant amount of information to be provided to consumers about health insurance, but has very little within it that specifically mandates the delivery of information to consumers about what treatment most suits each of their unique situations. Nevertheless, there is still time for policymakers, payers and providers to interpret portions of the law in a manner that would provide meaningful decision support tools to consumers so they can begin to wade through the crazy quilt of options presented to them by the healthcare system. Faced with the decision to screen or not to screen, and especially with the cascade of decisions that flow from that first one, consumers need more than a breath test—they must be armed with information that gives them the confidence to exhale.