Why Health Reform Will Be a Danger to Passive Patients

Even if Congress soon ends health insurance worries, your job as an informed patient will be key.

Video: Health Insurance Basics

Video: Health Insurance Basics

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Be an educated patient. Today, with any medical issue a few intelligent Google clicks away, patients are empowered to freely pursue the latest therapies. That freedom is almost sure to be curtailed; by relying on comparative-effectiveness studies to determine what should be standard care, a more centralized medical culture will focus on what's best for most people. This will narrow patient and physician choice, experts predict, and sometimes collide with medicine's drive toward more personalized therapy tailored to an individual's genetic makeup. The bottom line: It will be more important than ever to understand what science is discovering about your colitis treatment, say, or your child's recently diagnosed leukemia.

Comparative-effectiveness studies that tap large patient databases to compare both effectiveness and cost are unlikely to get it right every time. Individual patients don't always fit the mean, and newer science can quickly outdate older studies. Moreover, medicine is rife with reasonable but conflicting interpretations of the same findings. Just recently, two respected studies of prostate-specific antigen screening initiated in men at middle age were published at the same time in the same journal. One found that PSAs saved lives and decreased the disease's spread to bone; the other showed no benefit from the tests. Currently, the U.S. Preventive Task Force, a standing advisory body to the Department of Health and Human Services, makes no recommendation on PSA screening for men under 75 years of age because of insufficient evidence. And it says that screening should not be performed in men over 75, since the potential for harm outweighs the benefit. In contrast, the American Urological Association asserts that the yearly screening test should be offered to men ages 40 and older, including those over 75 if they have a life expectancy of at least 10 years.

Under health reform, a new governmental committee will follow the lead of the preventive task force when it rules whether preventive tests should be covered, and equivalent advisory groups when it comes to treatments—not the specialty physician groups closest to the patients. While it remains to be seen how dueling judgments will be handled, know that you might need to decide whether to pay for a test or a therapy out of pocket.

Or perhaps you might agitate politically for a different ruling. The British national health system, which is comfortable making tough rationing decisions, has recently experienced a few dust-ups with the public after denying some very expensive drugs for some very serious illnesses, like cancer and blindness. Anguished patients and furious doctors took to the streets. Joseph Antos, health policy expert at the American Enterprise Institute, points out that Americans aren't known for their tolerance when personal choice is pitted against central decision making and has wryly commented that "inside every American beats the heart of a subversive." Raising uncertainties about the gray zones may fall to the patient. And certainly, more tightly controlling care—setting tougher standards for, say, hospital readmissions of the chronically ill—will offer an incentive for patients to exert their own form of control: staying well.

Manage your pocketbook. The Congressional Budget Office, the financial Yoda that has been modeling just what health reform would do to government outlays, estimates that it will require $1 trillion or more between 2010 and 2019 to take care of America's uninsured. Medicare programs will give up almost half of that, making the elderly unnerved. The other half will be raised by taxing the wealthy as well as some combination of drug and device makers, insurers, or those with especially rich coverage. But the CBO looks at only the federal pocketbook. What's unclear is the impact on family budgets of mandates, premiums and copayments, other out-of-pocket costs, taxes, and fines. For example, expanding Medicaid to include many of the uninsured is bound to hit families if states—which lack the luxury of printing money—raise taxes to pay their share.