Health Care and Cancer: Reforming the Odds in a Costly System

The government body that recently advised women in their 40s that they needn't bother with mammogram screenings now says its message was misunderstood. The task force "did not say what the task force meant to say,'' its vice chairman told Congress last week.

Actually the Task Force on Preventive Services said exactly what it meant to – and what needs to be said: that scientific measurement of medical procedures to determine outcomes is valuable and important. But women, and many health professionals, didn't like the message. So the administration and its appointed panel scrambled like scared rabbits in the other direction.

As Congress wrestles its massive health reform bill to passage, the task force raised the first tiny specter of health care rationing with its call for scaled-back breast screenings, telling women they are better off to wait until they are 50 to have a first mammogram and then have them every other year rather than annually. Predictably, the reaction was a maelstrom of indignant fury.

In a system that has conditioned Americans to think that when it comes to health care, more is always better, having fewer tests is a hard concept to sell, even when analysis of data from myriad studies shows that the risks of over-diagnosis far outweigh the benefits. Though the panel said biennial mammograms would provide 80 percent of the benefits of annual screening while cutting the downsides – particularly false positive readings leading to unnecessary biopsies – nearly in half, what woman wants to gamble on falling into that 20 percent group?

I know a little something about costly odds. I have multiple myeloma, an uncommon, incurable blood cancer. I hit the myeloma jackpot: out of 280 million people in the country the year I was diagnosed, only 15,000 people got it. But although the median survival time for myeloma patients then was two to three years, I'm nine years out and living a near-normal life. I am one lucky soul who managed to beat the odds.

But the cost to keep on living is huge. Thankfully, I have good insurance, and have availed myself of the latest advances in medicine, including a stem cell harvest and a stem cell transplant at the Mayo Clinic, each necessitating month-long stays. (Not to mention a clinical trial with Thalidomide, a drug that caused birth defects in the 1950s, as well as chemotherapy, radiation and vertebroplasty surgery on my spine.) Revlimid, the drug I currently take to keep the myeloma from further corroding my bones, costs about $70,000 a year. My share is $100 a month.

The enormous expense of cancer care – particularly for diagnoses with the worst prognosis – is a driving force in the relentless rise of health costs. Is this huge investment of resources a sensible approach to diseases for which there is no cure and for treatments that often extend life by only a few months? To me, of course, the answer is quite clearly yes. But my disease, though not curable, is treatable, and fortunately, new treatments are waiting in the wings. That is not the case with many other cancers.

Yet I confess I sometimes feel guilty about the extraordinary expense incurred in my behalf that contributes to an out-of-control health system and adds to an unthinkable trillion-dollar deficit that our kids are going to pay for. While I personally would not want any of my options to have been "rationed'' away, I agree in principle with those, including my colleague Delia Lloyd, who maintain that "rationing" means putting governmental resources toward health interventions with the most impact, then we should all be for it. How can we reform public health care when the government pays doctors and hospitals for each and every procedure, whether the results prove helpful or not? The incentive becomes not to prevent illnesses but to just keep on treating them.

To address the uproar over the mammogram report, the Senate rushed Thursday to approve its first amendment to the bill: requiring insurance companies to pay for preventive services for women 40 and over. Never mind that every state but Utah already requires insurance companies to pay for annual mammograms for women in their 40s. And never mind that the task force analysis showed that for that group, about 1,900 needed to be screened annually for 10 years to prevent one breast cancer death. Meantime in that same decade, annual screenings would generate more than 1,000 false positive results. Panel members concluded that many abnormalities caught early would never have become life-threatening, yet to verify the diagnosis, women undergo more radiation exposure from further X-rays, intrusive biopsies and worry. They decided that was not an acceptable balance of risks and benefits.

With cancer – so deadly and so potentially curable – the odds take on outsized significance. This year, approximately 190,000 American women will have been diagnosed with breast cancer. Some 40,000 of us will die from it. How do you convince people that judging outcomes with scientific data – which could mean fewer procedures – is the road to quality health care and fiscal responsibility, when their mother's cancer has a long-shot chance of being cured?

Dr. John L. Marshall, clinical director of oncology at Georgetown university, says it is time to "ask some difficult questions: Does it make sense to support cancer care at the current levels in the United States? Who should determine the value of care?" Despite state-of-the-art therapy and new treatments, he wrote last week in the Outlook section of The Washington Post, 40 of the 50 patients with gastrointestinal cancer he sees in a typical week will not make it.

In most countries, Dr. Marshall writes, cancer care is a medical luxury because of its cost and limited effectiveness. In this country, we don't even know which treatments provide the best benefit for the cost because those trade-offs are not measured except in clinical trials, in which only five percent of cancer patients participate. That means for the other 95 percent, treatment is mostly a hit or miss affair. "The incentive system makes it less lucrative to talk to patients – to counsel them, to help with their decision-making – than to treat them, regardless of the value of the treatment,'' Marshall said.

He's not telling patients to give up hope and surrender to their disease. But he says there is a disconnect between costs and expectations. If patients had to actually pay for the "hope,'' they might make different decisions, he says. "Because I cannot say for sure that a given treatment will not work, patients will risk a try at it. If they also had to pay thousands of dollars for that treatment, they might not take that treatment but instead demand a better answer. Is false hope as valuable as real hope?"

When Dr. Diana Petitti, the vice chairman of the task force that studied the breast cancer data, went before Congress on Wednesday to assure lawmakers that the government was not trying to deny women their mammograms, she emphasized that "cost was not in the room – was not mentioned, was not uttered.''

Unfortunately, in our medical system, cost has never been in the room. Which explains why, as Secretary of Health and Human Services Kathleen Sebelius noted recently, health care expenses per capita in America are twice that of nearly every other developed country. In results, however, we often rank dead last. Moreover, the kind of risk-benefit analysis that the task force has been doing for 25 years – so-called evidence-based medicine – is a foreign language in a system where the variation in treatment is huge and doctors rely more on informed intuition than analysis of medical outcomes.

Representative Jim Cooper has been saying for months that the United States wastes $700 billion a year in health care spending. The Tennessee Democrat adds that regional disparities in medical practices are so great it would be worth it for the government to fly patients in Miami to Minnesota for care. "We could give them a free Lexus automobile because we would save so much money in the process.''

Since the task force recommendations on mammograms were issued two weeks ago, countless women, and many (not disinterested) health experts, have insisted that annual screenings, while costly overall, are necessary because early detection is crucial. But Dr. Russell Harris, a task force member and professor of medicine at the University of North Carolina, told The New York Times that is not always the case. There are essentially three types of cancers, he said: one grows so fast that early diagnosis makes no difference. Another grows so slowly it doesn't need to be found early to be cured. The third type of cancers, that are successfully treatable only when caught early, comprise only 15 percent of breast cancers.

That 15 percent explains why those diagnosed with cancer will cling to the hope that they will beat those odds with the latest treatment, proven or not, no matter the cost.

As for cost containment, the two yet-to-be-reconciled health bills in Congress get a failing grade from Jeffrey S. Flier, dean of the Harvard Medical School. "I find near unanimity of opinion,'' Flier wrote in the Wall Street Journal, "that the final legislation that will emerge from Congress will markedly accelerate national health-care spending rather than restrain it." That means a continued cost crisis and "perpetuation of the current dysfunctional system – now with many more participants.''

The top recommendation for reforming the health system that emerged from a Wall Street Journal Q&A discussion with health professionals last month was to move away from the fee-for-service payment system and adopt what is known as bundled payments. They would offer doctors and hospitals a set fee for certain illnesses to cover the full cycle of health care -- from the work-up on the front end, to the treatment that is offered, to whatever follow-up care might be necessary. The second recommendation was to require reports on patient outcomes based on national standards to which the payments would be linked.

It feels like we are a long way from achieving those kinds of reforms. The pilot programs and demonstration projects in the pending bills that deal with those approaches are a very tiny part of the massive legislation. Some of these reforms might work and could provide marginal improvement, said James C. Capretta, a former associate director of the White House Office of Management Budget and now a Fellow at the Ethics and Public Policy Center. "But would they fundamentally change Medicare, much less the rest of American health care? No, they wouldn't.''