The AIDS Exception: Privacy vs. Public Health

It's time to stop granting "civil rights" to HIV—and to confront AIDS with more of the traditional tools of public health

EPIDEMIOLOGY, which encompasses both the systematic study of infectious disease and the implementation of the means to contain it, is something of a medical oddity. As dependent on statisticians and politicians as it is on medical-care providers, and often used at times of desperation, by practitioners who have been accorded police and in certain cases military powers, epidemiology has sometimes had to strike a balance between the harshness that may be required to control infectious diseases and the civil liberties of people whose rights may be subject to abridgment.

Since the turn of the century, with the introduction in this country of bacteriological testing and the establishment of boards of health, standard public-health measures have been deployed against infectious diseases. These measures, leaving aside the extreme step of holding people in quarantine, have typically included at least some of the following: routine testing for infection, often undertaken without explicit patient consent; reporting to local health authorities of the names of those who test positive for infection; contact tracing, or the identification of any people who may have been exposed to infection; and notification of these possibly infected people that they may have been exposed. Some combination of these four practices has been commonly applied against outbreaks of infectious diseases, including typhoid, diphtheria, and tuberculosis, and against upsurges in sexually transmitted diseases. It would be surprising if, out of all the viruses and bacteria that can do us significant harm, one was exempted from the scope of these measures. It would be even more surprising if the one chosen pathogen was responsible for an epidemic that today constitutes the leading cause of death among all Americans aged twenty-five to forty-four.

This very thing has, of course, happened, largely in order to accommodate civil-rights concerns. The practice of traditional public health has been to a great degree suspended for acquired immune deficiency syndrome and for human immunodeficiency virus, the virus that causes it. Although various traditional public-health steps are being taken against AIDS and HIV, in differing combinations from state to state, the result is a chaotic patchwork—one that is inadequate, a growing number of critics say, to the task of containing and eradicating AIDS.

"We have convinced ourselves," Ralph Frerichs, a prominent epidemiologist at the University of California at Los Angeles, wrote in a recent issue of the journal Epidemiology, "that the fight for survival can be waged in a way that is socially acceptable but not always biologically credible." Many public-health officials, he contended, "have remained steadfast in their commitment to programs and approaches that have hidden the identity of HIV carriers but have failed to halt viral transmission"—a commitment that is in the end bound to prove self-defeating, "making winners of the virus but losers of people."


WHAT is known in the field of public health as AIDS exceptionalism has been maintained in legally and programmatically direct ways and also in complex and subtle ways. Its origins are not difficult to ascertain.

When AIDS first surfaced, in the early 1980s, it was indisputably a disease of urban male homosexuals (and, to a far lesser extent, of intravenous-drug users). Public-health authorities, faced with a fatal, communicable disease whose method of transmission they did not understand, desperately needed the cooperation of the infected—as they would in any epidemic. In the case of AIDS, however, the infected eventually became disinclined to cooperate. "In the first months and years of the epidemic," the journalist Elinor Burkett, the author of The Gravest Show on Earth  (1995), recalled not long ago, "people with AIDS died in the hallways of hospitals, where nurses wouldn't touch them. They were kicked out of their apartments. Insurance companies canceled their policies. Their bosses fired them. They had no idea how to get Social Security disability payments or Medicaid."

The discovery of HIV, and the development of a test that could detect it, brought matters to a head. In the aftermath of anti-gay persecution and even violence, the price exacted by a terrified gay community for cooperation in even a rudimentary public-health effort was ironclad anonymity. In 1985, shortly before the federal government was to announce the licensing of the first test for detecting HIV, the National Gay Task Force and the gay civil-rights group Lambda Legal Defense and Education Fund filed a petition in federal court to delay this action, pending a legal guarantee that the test would not lead to widespread screening aimed at gay men. They then put pressure on the Food and Drug Administration, which along with the federal Centers for Disease Control <>  (now the Centers for Disease Control and Prevention, and henceforward referred to as the CDC) had been made aware of eager queries from school districts hoping to use the HIV test to identify and fire gay teachers. The FDA quickly acceded to the demand that the HIV test be used not to screen and identify people for HIV infection in systematic campaigns but only to screen the blood in blood banks.

Out of the threat that the HIV test posed to privacy grew a rigid resistance to almost all HIV testing without consent—and a public-health approach to combating AIDS characterized by considerable delicacy. The FDA's agreement to restrict how the HIV test could be used resolved, temporarily, a political problem. Left unanswered, as Randy Shilts, in his book And the Band Played On (1987), observed, was "the broader public health question of how you can control a disease if you decline to find out who is infected." Shilts went on, "In this poisoned atmosphere, the nuances of long-term consequences for control of the infection fell low on the list of gay concerns."

The result, ultimately, was the effective suspension of traditional public-health procedures for AIDS, which is to say, there would be no routine testing for HIV; the reporting of the names of the HIV-infected would be required only in some places, and would miss the epidemic's hotspots; and contact tracing and notification would as a result be greatly handicapped, and in many places pursued in desultory fashion if at all, often in the face of opposition. All efforts were to be voluntary—dependent on educational outreach and persuasion rather than on systematic procedures. "U.S. officials had no alternative but to negotiate the course of AIDS policy with representatives of a well-organized gay community and their allies in the medical and political establishments," Ronald Bayer, a professor at the Columbia University School of Public Health, wrote in a critical retrospective some years ago. "In this process, many of the traditional practices of public health that might have been brought to bear were dismissed as inappropriate."

 A NUMBER of opportunities present themselves for the routine testing of people for various diseases by public institutions, routine testing being defined as testing that can be performed without a person's explicit consent. Pregnant mothers are routinely tested for tuberculosis, hepatitis B, and syphilis; testing for chlamydia and group-B streptococcus is also common under certain circumstances. Newborn babies are routinely tested, without the mothers' permission, for phenylketonuria and hypothyroidism. Patients admitted to hospitals may undergo a variety of blood tests, depending on their symptoms, the tests being performed as a matter of course, without necessarily informing the patient or asking explicit permission. Although a patient can at any time refuse to undergo a routine test, he or she does not have to be specially notified that the test is being done or given a specific opportunity to refuse.

HIV testing, in contrast, is almost always voluntary—which means it is done either at an anonymous-testing site or with a person's explicit permission (and which usually means also that the person being tested must sign a release). At the federal level HIV testing is required only of immigrants entering the country, foreign-service and military personnel, and federal-prison inmates. At the state level routine testing is prohibited everywhere except under narrowly defined circumstances. Marcia Angell, the executive editor of The New England Journal of Medicine, and a proponent of routine testing in some form, says, "Having to ask specifically has a huge effect, and it is a clear difference between AIDS and many other diseases."

Making even certain subpopulations the target of routine testing would turn up large numbers of infected people who currently escape detection. In a 1992 New England Journal of Medicine article Robert Janssen and his colleagues at the Division of HIV/AIDS at the National Center for Infectious Diseases recommended voluntary targeted testing for HIV in certain hospitals, a policy well short of routine testing and yet one that has been implemented virtually nowhere. They wrote,

We estimate that about 225,000 HIV-positive persons were hospitalized in 1990, of whom only one third were admitted for symptomatic HIV infection or AIDS. Routine, voluntary HIV testing of patients 15 to 54 years old in hospitals with 1 or more patients with newly diagnosed AIDS per 1,000 discharges per year could potentially have identified as many as 110,000 patients with HIV infection that was previously unrecognized.

Testing that is merely voluntary may also miss populations that disproportionately need to be reached. The people least likely to have the virus are the most likely to say yes to a test, and the people most likely to have it are the most likely to say no. In one study infection rates were 5.3 times as high among people who refused HIV testing as among people who consented to it.

One might ask, How could a study give the infection rate of those who refused the HIV test? The answer demonstrates the methods that researchers—in this case, at the New Mexico Health and Environment Department—must employ in order to obtain data without violating personal rights as protected by law. Voluntary, anonymous HIV tests were offered over a three-month period to all patients visiting a sexually-transmitted-disease clinic. Eighty-two percent of the patients consented to being tested for HIV. To determine the rate of HIV infection among those who did not consent to testing, researchers located serum that had been taken from these patients for syphilis testing, removed all identifying information, and then tested the serum for HIV.

Exceptionalists argue that routine testing will "drive AIDS underground"—make people avoid the health-care system altogether. There is no empirical proof that this will or won't occur to a greater extent than it already does, under a voluntary regime. Ultimately one must ask whether people who would go underground because of perceived self-interest should dictate policy—and also whether such people would cooperate in disease-prevention efforts under any circumstances.

WHY does testing matter? The most basic epidemiology holds that early knowledge of where a virus is moving—into which populations—is essential to slowing its spread. Even if a disease cannot be cured, knowing who the infected people are may help prevent the transmission of the disease to other people. Geneviéve Clavreul, a California-based consultant to the International Cancer and AIDS Research Foundation, says that because of testing and reporting restrictions the California Department of Public Health is in essence "flying blind" in its epidemiological tracking. By law or regulation, cases of certain sexually transmitted diseases and of many other infectious diseases must be reported to state departments of health, and the names of the infected are in most cases provided and are always held in confidence. HIV is the exception. Although the disease called AIDS must be reported by name in all fifty states, infection with HIV, the virus that causes AIDS, need not be: only twenty-six states mandate the (confidential) reporting by name of positive test results for HIV, and these states tend to be ones with modest caseloads. Twelve states—including California and New York, by far the two worst-afflicted states—have no broad reporting requirements for HIV.

Requiring the reporting of AIDS but not HIV seems equivalent to requiring, say, that full-blown cases of hepatitis B be reported but not any newly detected infections with the hepatitis virus. Actually, it is worse. The incubation period for hepatitis B is usually two or three months, whereas the period between infection with HIV and a diagnosis of AIDS is often longer than ten years. This means that during all this time HIV-positive people can be both infectious and outside the public-health system. The disease is further privatized by the HIV home-testing kits now on the market, which to yet one more degree put testing and reporting into the hands of individuals.

As noted, state public-health practices mandate that certain sexually transmitted diseases be reported; in part to avoid reporting HIV some states have decided not to classify HIV as a sexually transmitted disease—even though the primary mode of HIV infection is, of course, sexual. As of 1995 only twelve states had classified AIDS and HIV infection as sexually transmitted diseases. Only sixteen states had even classified them as communicable diseases. Treating AIDS and HIV infection as exceptions, twenty-three states, including New York and California, had classified them as a separate category of disease. A report prepared for the CDC by Georgetown University and Johns Hopkins University's Program on Law and Public Health observes of this situation: "Disease-specific legislation may thwart public health goals by generating separate policies, programs, and procedures for diseases that may share common behavioral risk factors and require a unified approach for treatment and prevention."

BEYOND issues of testing and reporting lies the issue of partner notification. "Partner notification" is the term used by the CDC to describe a spectrum of outreach efforts. One such effort is contact tracing, also called "provider referral," in which doctors or public-health officials locate partners of infected people (if the infected people are willing or able to provide names) and notify them of possible infection; the name of the known infected person is always kept confidential. At a further remove on the spectrum is "patient referral," in which infected people locate and notify partners on their own. Only thirty-three states have laws that explicitly allow doctors or public-health officials to notify the sex or needle-sharing partners of those with AIDS or infected with HIV. Only four states (Arkansas, North Carolina, South Carolina, and Oregon) have statutes requiring notification.

All states technically have something that they can point to as a "partner-notification program," having such a program being a prerequisite for obtaining certain federal funds. But the effectiveness of partner-notification programs varies widely, for reasons relating as much to how the programs are implemented as to what specific steps they call for: the real difference is between states, such as Colorado and North Carolina, that actively strive to find and notify partners primarily through provider referral, and states, such as New York and California, that tend to rely on patient referral, deferring the responsibility of notification to the infected.

Partner Notification

 Colorado's policy on partner notification, from the Boulder County AIDS Project. As one would expect, there seems to be a marked contrast between the effectiveness of well-established partner-notification programs in which provider-referral services are made available, and that of programs in which infected people themselves do the notifying if they are so inclined. One study found that active partner-notification programs offering provider-referral services get 30 to 90 percent (depending on the city or state) of people who have tested positive to cooperate in contacting those they may have infected. Ninety percent or more of those contacted agree to be tested. However, programs in which notification is left up to the infected achieve a cooperation rate of less than 10 percent. It should be noted also that by virtue of the fact that trained public-health personnel in most instances make the notifications in provider-referral cases, testing information and counseling are made readily available to possibly infected contacts. Programs that notify primarily through provider referral find a larger proportion of other infected people, and find them earlier. The sooner a person knows of his or her infection and begins treatment, and the higher that person's T-cell count when treatment begins, the better the prognosis. In a recent study conducted at a Los Angeles AIDS clinic the average T-cell count in HIV-positive women who entered the clinic through active provider-referral partner notification was found to be 411; the average for all other women entering the clinic was 157. ("T-cell count" refers to the number of T-helper cells, a kind of white-blood cell that is essential to the proper functioning of the cellular immune system; HIV attacks and kills these cells. The T-cell count is closer to 1,000 in a healthy person, though the healthy range is subject to considerable variability. A T-cell count under 200 is one of the criteria for a diagnosis of AIDS.)

Does an absence of routine testing, reporting, and notification mean that a lot of undiscovered AIDS and HIV cases are festering in the larger society? Yes. According to the CDC, the number of Americans infected with HIV is as high as 900,000; of these, the CDC estimates, perhaps half are unaware of their infection. At least a quarter of all people in whom AIDS was diagnosed from 1990 to 1995 in Los Angeles County first became aware of their infection when they came to hospitals or clinics with advanced symptoms, having never previously been tested for HIV. In all likelihood such peoplehad been HIV-positive for years. Most cancer, diabetes, or high-blood-pressure patients have been tested for these medical problems, know their status, and have begun treatment well before admission to a hospital with advanced symptoms. The situation with AIDS means, as one Los Angeles AIDS clinic director observed during a recent interview, that "something is really wrong." Because the lifetime cost of treating HIV is so high (estimated in 1993 to be $119,000 per patient), the CDC has concluded that AIDS and HIV notification programs pay for themselves if only one in eighty notifications prevents a new HIV infection by indicating to the notified person that a change in behavior is warranted.

AIDS has been so thoroughly exempted from traditional public-health approaches that civil libertarians have defeated in court attempts by health authorities to notify the spouses of people who have died of AIDS that their husbands or wives were HIV-infected. During the first years of the disease, legislation urged by civil libertarians prohibited physicians and public-health officials from notifying even the spouses of living people who had tested positive for HIV, some of whom continued to have unprotected sex with their partners. In some states laws have been enacted making partner notification by a physician at best discretionary under tightly defined circumstances.

National legislation on spousal notification, passed last year, mandates that states make a "good-faith effort" to notify at-risk spouses. However, in effect the law applies only to states that already require the names of infected people to be reported. And in any event, the matter of partner notification when the partners are (or were) married addresses, of course, only a small part of the AIDS problem.

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