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Roundtable
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The AIDS Exception: Privacy vs. Public Health
Round One -- Response
Posted on June 3, 1997

JOEL GALLANT

Both Congressman Coburn and I began our statements in the same way. We said that public-health measures have not been adequately employed against the AIDS epidemic, and we used as proof the fact that the majority of infected Americans are unaware that they're infected. But Coburn's bill does not really address this overarching problem or attempt to remedy it in any substantial way. Instead he proposes solutions to two much smaller problems: that some who know they are infected are not telling their partners, and that public-health officials are not able to keep track of the epidemic. Assuming that these problems exist at all, their contribution to the growth of the epidemic is questionable.

The first problem, that infected people are not telling their partners, has never been supported by the data. At the Johns Hopkins Moore Clinic, where we follow more than two thousand HIV-infected patients, clinicians rarely encounter such patients. One might argue that we are being misled and that our patients are merely telling us what we want to hear. In that case it's unlikely that they'd be any more open with public-health officials carrying a pen and a government form.

Why, then, does Congressman Coburn propose mandatory partner-notification programs? Because, he says, "they work." But what is true for some diseases is not necessarily true for others. Perhaps the best example of a disease for which a contact-tracing program works is tuberculosis, a highly contagious disease for which effective prevention is possible and for which there exists curative treatment. Moreover, those individuals at risk -- family members and other close contacts of the infected case -- are usually readily identifiable. The analogies to HIV infection are strained at best. HIV is not highly contagious, and mutual participation is generally necessary for infection to occur. There is no therapy that would prevent infection (unless it were to be given hours after exposure), and there is no cure. Because transmission occurs through sexual contact and drug use, the identification of those at risk requires that the infected individual divulge sensitive information. Partner notification for HIV infection falls apart without voluntary cooperation, and the barriers to such cooperation are much larger than those seen with tuberculosis.

An implication of Coburn's discussion -- and the second problem his bill addresses -- is that our understanding of the epidemic is severely hampered by our failure to require name reporting of all HIV-infected individuals. This is a position more often taken by politicians than by epidemiologists, who would seem to have much to gain from universal reporting if such an assertion were true. But in fact this emphasis on reporting is out of proportion to the utility of the data it generates. In the United States disease reporting is a flawed and incomplete method for gathering epidemiological data. The reporting of salmonellosis is required by law, for example, yet only five percent of cases are actually reported. AIDS is also underreported, despite the fact that reporting data are used to determine the size of government grants that help clinicians and communities care for infected patients. Fortunately, public-health authorities have much more sophisticated methods for tracking epidemics which do more than merely tell us how many people have been tested and reported. If Congressman Coburn thinks that such methods are unreliable I would ask him how he can so confidently state that "about half of the nearly one million people infected with HIV in the United States are thought to be unaware of their status." This statistic clearly cannot have come from AIDS name-reporting data.

It would be a serious mistake to rely on disease reporting for our understanding of the HIV epidemic, even if reporting of HIV infection were required. We have only to look at the facts: a large proportion of the infected population remains untested, physicians have a poor track record when it comes to disease reporting, there is growing enthusiasm for anonymous testing (including home testing), and we are now able to diagnose HIV infection without the standard HIV antibody test, using T-cell measurements and viral-load tests that measure the amount of HIV virus in the blood. Thus it is difficult to see how the limited data arising from any expansion of reporting would contribute significantly to our ability to track the epidemic.

Chandler Burr is justified in objecting to the dogmatism of some exceptionalists. If our goal is to control the AIDS epidemic and to identify infected individuals so they can benefit from treatment, then we should all be listening calmly and rationally to both sides of the argument and looking for solutions that work. But Burr and Coburn are guilty of a different type of dogmatism: the assumption that public-health approaches to infectious diseases are monolithic and unalterable, that they should be routinely applied to all transmissible diseases, and that they are equally effective in every case. Both Burr and Coburn imply that exceptions are made only for AIDS.

In fact public-health measures are routinely tailored to the disease to which they are being applied. Many contagious diseases are not reported at all. Reporting is not required even for some sexually transmitted diseases, such as chlamydia, herpes, and human papillomavirus infection. Many states have abandoned contact tracing for gonorrhea, a disease that is now so highly endemic in society that partner notification is not felt to be cost effective.

What I find lacking in the traditionalists' arguments is an understanding of the practical issues in question, an ability to see gray areas, and a recognition that there is a difference between methods that will lead to real benefit and those that will produce only marginal benefit. Will partner notification identify some cases of HIV infection? Of course. Will reporting of HIV infection give us additional data? Naturally. Are those approaches real solutions to the problem of undiagnosed infection and the continued spread of the epidemic? Not at all.

Burr and Coburn have been extremely selective in their choice of public-health approaches that they propose to apply to the AIDS epidemic. They have chosen methods that may engender greater mistrust of the government and may drive more people away from the health-care system. It is all very well for Burr to argue that this mistrust is now unfounded and to label his own anonymous test as an antisocial act. Such attitudes did not arise in a vacuum, however, and even if one accepts that such fears no longer have any basis in reality, they cannot be wished or legislated out of existence. Any measure that exacerbates them is counterproductive to our goal of controlling the epidemic and identifying infected individuals. The continued use of anonymous HIV-testing centers and the immediate enthusiasm for home-test kits are clear indications of the continued reluctance of many of those at risk for HIV infection to trust the public-health system or the medical establishment. HIV infection is now spreading disproportionately through economically disadvantaged populations, which are often disenfranchised from the health-care system. We should be trying to bring those people into the system rather than driving them away.

How long will we continue to ignore the evidence that needle-exchange programs decrease HIV transmission before we embrace these programs on a national level? How many more teenagers will become infected before we understand that abstinence cannot be the only prevention message we give to our children? How many more studies documenting the growing prevalence of HIV infection among young adults in inner-city emergency rooms do we need before we actually begin using those emergency rooms as places to offer voluntary testing and referral to treatment? The magnitude of benefit achievable with any one of these measures could be enormous. None requires coercion. None requires legislation. I suggest we try them first.


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Roundtable Overview



Introduction and opening questions, by Cullen Murphy

Round One -- posted on June 3, 1997

Round Two -- posted on June 19, 1997

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