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


HOW has AIDS exceptionalism been justified? In the mid-1980s four arguments were regularly heard for exempting AIDS from standard public-health practices. 1) There had never before been a disease that seemed to constitute a de facto marker for homosexuality, with all the social stigma that this label carries. 2) The confidentiality of testing would inevitably be violated, precisely because AIDS is more stigmatized than any other disease. 3) Given the large number of sex partners of many of those who have become HIV-infected, contact tracing would be ineffectual. 4) Because there is no cure for AIDS, and no treatment to render the infected uninfectious, it was pointless to report HIV infection as is done for other infections.

However legitimate the civil-liberties issues it sought to address may have been more than a decade ago, the exceptionalist orthodoxy is now fundamentally wrongheaded as a matter of good public health and medicine.

The argument that AIDS is a unique marker for homosexuality is incorrect, and always was so. Rectal gonorrhea in men has been almost exclusively a disease of the gay population, and is a more reliable marker for homosexuality, if anyone were looking for such a marker, than AIDS ever was. And yet cases of rectal gonorrhea have appeared for decades, by name and date, in confidential case reports sent to state public-health departments.

The argument that confidentiality will inevitably be violated has met a serious counter-argument in the form of reality: the experience of Minnesota and Colorado, which have since 1985 mandated the confidential reporting by name of both HIV and AIDS cases. As of the end of last year, for example, Colorado health authorities had received the names of 5,723 people with AIDS and of 5,137 additional people infected with HIV. There have been no breaches of confidentiality. As noted, twenty-six states now require confidential reporting of all HIV cases by name. A single intentional breach of confidentiality in the CDC's AIDS surveillance system is known to have occurred (in Florida).

As for discrimination, the federal Americans with Disabilities Act (ADA), passed in 1990, a decade after the beginning of the AIDS epidemic, prohibits discrimination based on HIV status. In addition, the federal Vocational Rehabilitation Act of 1973, state discrimination laws, and state constitutions have all been interpreted by courts as protecting people from exactly the sort of discrimination that AIDS exceptionalists claim is inevitable. And courts have in most cases ruled that being infected with HIV constitutes a disability according to the legal definition of the term, even when the infected person is asymptomatic. "We've done more or less everything that can be done on the legislative front to protect people from discrimination on the basis of HIV status," says Chai Feldblum, an associate professor at Georgetown University Law School and one of the principal architects of the ADA. "The laws are there."

The argument that contact tracing will prove to be ineffectual because many of those infected with HIV have had a large number of sex partners ignores the fact that many of those infected with syphilis and gonorrhea, other diseases for which gay men are at increased risk, have also had a large number of sex partners, and yet contact tracing has been standard procedure for these diseases for decades.

The argument that name reporting is pointless because there is no treatment has always been open to question on a number of grounds. Yes, the statement may have a certain logic from the perspective of a given infected individual concerned only about his or her fate. But if infected people can be identified, education and counseling may at the very least prompt changes in their behavior which will diminish the risk that they go on to infect others; contact tracing, in turn, extends the possibility of risk-diminishing behavioral change even more widely. Knowing who is infected is essential in helping to prevent new infections, even if the infected person himself cannot be helped.

In any event, evidence shows that new medical treatments are making HIV less infectious than ever. The latest treatments are astonishingly promising for at least some of the infected population.

Some 15 to 30 percent of HIV-infected pregnant women pass the virus on to their infants. Early treatment with zidovudine, or AZT, for the woman during pregnancy and for the infant after birth, can cut the proportion to eight percent. A new class of drugs called protease inhibitors is likely to cut the rate even further, if the drugs are used early. The key word is "early"—which means testing pregnant mothers, not just newborn babies. The American Medical Association now recommends that HIV testing be made mandatory for pregnant women. Gay and AIDS activists have denounced this recommendation.

Protease inhibitors, which in some cases have reduced the level of HIV in the bloodstreams of the infected to undetectable levels, have revolutionized care for many patients. "I think we already have the capability to make HIV infection a chronic, manageable disease like diabetes in patients who can afford the therapy and who can take it with one-hundred-percent compliance," says Joel Gallant, the director of the Moore HIV Clinic at the Johns Hopkins University School of Medicine. Protease inhibitors have provoked debate as to their long-term effectiveness, their ability to withstand viral resistance, and their price (the protease inhibitor Invirase costs approximately $7,000 for a year's supply), and also, as Gallant has noted, because of the fastidiousness required for effective administration. But the fact remains that the exceptionalist argument that no treatment is possible is losing whatever force it had.

The benefits of knowing who is infected are still more compelling today than they were in 1992, when the CDC AIDS laboratory chief Donald Francis, writing in the Journal of the American Medical Association in favor of more-aggressive testing and the channeling of the infected into prevention and counseling programs, brought up "the ability to deliver important new products produced by scientific research." He wrote,

Should the day come when a vaccine or therapeutic drug becomes available, a system for immediate delivery to those in greatest need would be required. There is no system by which to do that now. But if all infected persons were being followed up in an early intervention program, delivery would be straightforward. In my opinion, early intervention should be given the highest national priority.

The fact that AIDS is not easily transmissible (it is a hundred times less infectious than hepatitis B, and incomparably less contagious than an airborne disease like tuberculosis) provides further impetus to discover who is and is not HIV-infected. The knowledge that a given person is infected, if it means that the person takes any preventive measures at all, is much more valuable in the case of AIDS than it is for other diseases.


DESPITE such developments, attempts to alter the public-health approach to AIDS, though on occasion successful, have met with fierce opposition. A case in point occurred in the spring of 1995, when Gary Ackerman, a liberal Democratic congressman from New York, introduced a bill with 220 co-sponsors to "unblind" a national infant-testing program for HIV run by the CDC as a way of monitoring HIV-infection rates in women. Since 1988 the CDC had been "blind-testing" infants for HIV in forty-five states—using blood samples, collected at birth, from which all identifying tags had been removed. Testing for HIV in this way meant that the CDC knew how many infants carried their mother's HIV antibodies but not who they or their infected mothers were. Mothers, therefore, were being sent home without being informed that they and in some cases their children were infected with a fatal virus. The CDC had no choice in the matter, being legally prevented from testing without informed consent. Under the Ackerman bill mechanisms were to be instituted so that if an infant tested positive, those doing the testing would have a way of knowing who that infant was, and its mother could be informed.

The response to this proposed legislation was immediate. Virtually every gay and AIDS group, including Gay Men's Health Crisis, the AIDS Action Council, and the National Association of People With AIDS, along with the ACLU and prominent public-health experts at leading universities, opposed the bill, largely on the grounds that unblinding the tests would do nothing to help prevent HIV transmission from mothers to their infants and would violate the privacy inherent in such an anonymous surveillance study, potentially scaring pregnant women away from seeking proper prenatal care. The intensity of feeling with which such measures have been opposed should not be underestimated. Ackerman's bill was modeled on a bill introduced in the New York State Assembly by the Democratic legislator Nettie Mayersohn to unblind the anonymous infant-testing program in New York. Mayersohn, a pro-choice, feminist old-line liberal who in 1989 had been named Legislator of the Year by the New York State chapter of the National Organization for Women, was labeled a "fascist" by individuals associated with the AIDS lobby. (Last June, three years after Mayersohn introduced her original legislation, the New York legislature passed a bill allowing the state to institute mandatory HIV testing of newborns and to notify parents of the test results. Newborn testing began last February.)

In the matter of the Ackerman legislation, the head of the CDC informed Ackerman that if the bill were not withdrawn, the CDC would suspend the infant-testing program altogether. Ackerman gave no credence to this threat by a public-health agency, because the infant-testing program was demonstrably useful in tracking the prevalence and trajectory of heterosexual AIDS. But the CDC program was indeed suspended. Public-health authorities thus lost even this imperfect means of monitoring one aspect of the epidemic.

In response to the CDC's suspension of testing, Ackerman joined forces with Tom Coburn, a Republican congressman and a Christian conservative from Oklahoma, to draft new legislation that has become known as the "Baby AIDS Compromise." The legislation was enacted last May as part of a larger bill, the Ryan White CARE Reauthorization Act. The compromise requires state health-care workers to offer counseling and voluntary HIV testing to pregnant women who have not previously been tested for HIV. States that by March of 2000 do not meet certain goals with respect to the voluntary HIV testing of pregnant women or to HIV incidence among newborns will have to implement a mandatory infant-testing program or lose some federal AIDS funding.

THE ultimate question for AIDS exceptionalism is this: Do the disease-containment and disease-prevention measures of traditional public health—the measures from whose full force AIDS has been significantly shielded—work? The answer given to this question by AIDS exceptionalists as well as traditionalists seems to be yes. Joel Gallant, for example, opposes routine involuntary testing for HIV and aggressive partner notification, but not on medical grounds; rather, he fears the potential for employment and insurance discrimination, domestic abuse, and breaches of confidentiality. He maintains that he would otherwise favor traditional public-health procedures for the fight against AIDS, particularly routine testing.

Lee Reichman, the executive director of the National Tuberculosis Center and a physician on the staff of the New Jersey Medical School who cares for AIDS patients, cautions that given the course that the evolution and politics of the disease have taken, traditional public-health measures by themselves may no longer be feasible, in part because of the possibility that they will drive the infected underground. As noted, this is an exceptionalist article of faith. But Reichman goes on: "Traditional public health is absolutely effective at controlling infectious disease. It should have been applied to AIDS from the start, and it wasn't. Long before there was AIDS, there were other sexually transmitted diseases, and you had partner notification and testing and reporting. This was routine public health at its finest, and this is the way STDs were controlled."

In the months ahead a national debate may well be joined over rescinding the exceptional public-health status of AIDS, owing in part to a bill introduced by Tom Coburn, the Oklahoma congressman. Coburn's bill, the HIV Prevention Act of 1997, would establish confidential HIV reporting nationwide. It would require states to inform anyone who has been exposed to HIV. It would require that all people accused of sexual offenses be tested for HIV. And it would allow health-care providers to test a patient for HIV before performing a risky invasive medical procedure. The Coburn bill contains a number of other provisions and also two nonbinding "sense of the Congress" resolutions, one urging states to criminalize the intentional transmission of HIV, the other affirming the principle that strict confidentiality must be observed in carrying out the bill's provisions. (A companion bill has been introduced in the Senate.) "The fact is that epidemiology works," Coburn says, "and public-health policies work to control disease, and they work by identifying vectors of infectious disease, and you notify people at risk. If you don't do that, you can't control the disease. And that's what we've not done with HIV."

The AIDS Action Council—a group "dedicated solely to shaping fair and effective AIDS policy," in the words of its literature—has denounced the Coburn bill as "an attempt to federalize policies that do nothing but stigmatize and punish people living with HIV/AIDS." The act, in the view of the council,"replaces education and personal responsibility with 'Big Brother' intrusion and control." In previous statements the council has characterized measures like the ones now proposed as "failed policies that do nothing to prevent any more Americans from becoming infected with HIV."

It is hard to see how traditionalist policies can be said to have "failed" with AIDS, since they have not been systematically tried. Be that as it may, some skepticism toward legislation like Coburn's is warranted. Conservatives representing themselves as public-health advocates are certainly vulnerable to a charge of hypocrisy. Coburn's bill does not address one of the exceptionalists' central criticisms: that although traditional procedures will identify more infected people, conservatives are not prepared to offer any plan for helping those infected people (many of whom have no health insurance and little education, and many of whom are homeless) after they have been identified. The Coburn bill offers no new funds for the state public-health departments that would be obliged to carry out its testing and reporting provisions. A traditionalist approach to AIDS will cost money, and those who advocate such an approach should be making the case that more money is needed.

Exceptionalists also point out, correctly and bitterly, that the hatred directed against homosexuals, and the discrimination they experience at the hands of anti-gay conservatives, among others, are responsible in the first place for the very exceptionalist policies that conservatives like Coburn now so strongly oppose. Coburn's own outlook gives one pause. It was Coburn who elicited condemnation and ridicule when he criticized the airing on network television last winter of Schindler's List, complaining about the depiction of violence and frontal nudity.

As noted, epidemiology has sometimes had to weigh the issue of civil rights against the issue of effective disease control. The time has come to consider anew how these factors should tip the scales. We do not, of course, have an absolute guarantee that traditional epidemiology applied to AIDS and HIV would markedly bolster the success of public-health efforts. But such a guarantee is hardly required. Marcia Angell, of The New England Journal of Medicine, observes, "Nobody can document or prove that traditional methods of control would work better at containing AIDS, because nobody has done what would be necessary to get such proof—studying two populations, one in which traditional methods are applied and one in which they aren't. The reason no one has done this is that it is impossible. It is impossible because it's unethical and logically unworkable. So, as in many things in life, the default position is common sense. And I have no doubt, given the track record of these methods in controlling other diseases, that if, for example, we screened all expectant mothers, we could prevent AIDS in many cases. And if we traced partners, we would prevent AIDS in many cases. And if we routinely tested in hospitals, we would prevent AIDS in many cases."

Ralph Frerichs, of UCLA, framed the matter like this in the course of an interview: "Historically, public health has always transcended the legal system, much like the military. When you have an outside threat, you can suspend the normal rules of society. Traditionally, we epidemiologists have been granted full responsibility, but society has eroded that, and we now talk about respecting the rights of human individuals who have disease-causing viruses, bacteria, and so on, which makes it increasingly difficult to stop the spread of these diseases. This is society's choice. But this is de facto granting rights to the viruses and to the bacteria. And when epidemics are presented this way, as a matter of rights, the public has a harder time distinguishing the infection from the infected. The virus is our enemy, not the person with the virus, but at the same time that person harbors the virus, and we need to take a series of steps to prevent that virus from moving to another person.

"In AIDS, as in all epidemics, there is a tradeoff between emphasizing detection of the virus and the civil-rights violations that detection engenders. Given that we have not pushed for aggressive testing, reporting, and partner notification, it appears that our society is willing to accept a higher amount of HIV infection to avoid interfering with the rights of HIV-infected people."

Earlier this year the Centers for Disease Control and Prevention reported that largely because of gains in life expectancy among the infected, annual deaths from AIDS had registered a significant decline for the first time since the onset of the epidemic. That they have done so is hardly grounds for complacency. It is evidence, however, that medical interventions make a palpable difference—and is all the more reason to start subjecting AIDS, from a public-health perspective, to more-systematic procedures.

In the end AIDS would be unlikely to prove resistant to good basic public-health policies. It may survive if it can circumvent good sense.

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