The Fight Over Who Gets to Define Disease

AIDS may be a horrible, debilitating illness, but the medical community still can’t figure out how to define it. In fact, the Centers for Disease Control--the nation’s official arbiter of illness--recently announced another delay in releasing a formal definition of AIDS.

To be sure, an official AIDS definition is more than just a semantic device to better track the epidemic; it determines who is reported as an AIDS case and that, in turn, influences everything from federal research funding to eligibility for health care benefits. For example, one criticism of the current definition of AIDS is that it does not include gynecological problems associated with HIV infection--the virus that causes AIDS. Consequently, women with such conditions are not necessarily eligible for benefits.

“We can’t expect a surveillance tool to solve the inadequacies of the health care system,” says CDC spokesman Kent Taylor, explaining the yearlong delay. More likely, the surveillance tools end up revealing them.

Picking the right words matter. Walter Zelman, state Insurance Commissioner John Garamendi’s special deputy for health insurance issues, notes that his AIDS task force now refers to itself as an HIV disease task force because, “AIDS is a stage of HIV disease.” In the public policy arena, defining a disease can be as important as diagnosing it.

The controversial challenge of defining AIDS/HIV disease is, literally and figuratively, but one symptom of an enormous problem in the unhappy debates about health care costs. For more than a generation, our health care conflicts have revolved around the spiraling costs of hospitalization, expensive new medical technologies and the question of access to care.

The critical health care debate of the 1990s, however, won’t be the cost of health care delivery or whether health care needs to be rationed. Instead, it will be: “What is really a disease and who gets to say so?”

Does the presence of the HIV virus constitute disease? Or must symptoms also be present? Does the existence of a defective p53 gene that could cause colon cancer mean an individual is “sick?” If a 59-year-old walks with a slight but permanent limp after a skiing accident at Lake Tahoe, does that mean he’s “unhealthy?”

Inevitably, the discussion needs to shift from building a societal consensus on appropriate price tags for treatment toward crafting a new awareness of what we mean by “illness” and “health” in an aging population.

“In our attempt to constrict the rise of health care costs, we are going to be forced to redefine what is desirable,” insists Dr. Willard Gaylin, president and co-founder of the Hastings Institute. “Like the Western frontier, we have an expanding concept of health--and we can no longer afford it. There’s been too much of a readiness to redefine pleasure, youthfulness and aesthetics as health issues.”

Indeed, says Gaylin, “Half of what we call health today would not have been considered health 50 years ago. . . . Fertility problems are now defined as diseases . . . so is fixing a knee, orthopedic surgery and plastic surgery. Before the invention of the lens, nobody worried about old people not being able to read.

“People who don’t know medicine assume that there’s a sickness and we discover a cure,” he adds. “Today, we frequently discover a cure and try to find a sickness to go with it. . . . . (Consequently), the power to define something as a disease is crucial.”

So who gets to define disease? Doctors? The government? Insurance companies?

In Oregon, for example, state and local communities have begun to come to grips not just with reshaping health care costs but redefining the meaning of health. What these initiatives are discovering, however, is that there’s far more to health care costs than redundancy, waste and an insatiable demand for high-tech therapies. The challenge is no longer “How much should we pay for whom?” It’s “What are we really paying for?”

Says Gaylin: “While cost-containment is the necessary first step, and the fat is cut out and redundancy is cut out . . . when all that is done, we’ll still have an insurmountable problem.”

Brookings Institution economist Henry J. Aaron, author of “Serious and Unstable Condition: Financing America’s Health Care,” says the debate has focused on the “easy issues” so far. “People who are interested in health care financing reform flee from this issue like the plague; it is political death. The reason is, it’s nothing but unpleasant choices and agonizing choices.”

The effort to define AIDS reveals that, in today’s environment, the power to classify may become as important as the power to cure. So the future of America’s health care could be as much a battle of semantics as a search for medical breakthroughs.