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The AIDS Exception: Privacy vs. Public Health
Round Two -- Concluding Remarks
Posted June 19, 1997


Chandler Burr says he doesn't understand my opening statement. He asks, "Well, if we haven't been trying the new exceptionalist methods and we haven't tried the old traditionalist methods, what, exactly, have we been doing?" Not nearly enough, as I've said. Public-health measures that have been shown to work -- such as needle-exchange programs and targeted, explicit prevention education -- have been successful in particular areas and among selected subgroups but have not been embraced on a national level. In his commentary, reader David Hansell reminds us of the fact that some of the greatest strides in the prevention of STDs and HIV infection in the AIDS era have occurred through the grass-roots public-health efforts of infected communities, independent of the public-health infrastructure. In fact, enormous declines in new HIV infection were seen among gay men in San Francisco long before an official public-health response existed at all. In contrast, despite Tom Coburn's glowing representation of the current state of syphilis in the United States, the city of Baltimore is now in the midst of a record-breaking epidemic of syphilis which has occurred despite the standard "traditionalist" approaches to syphilis control.
What do you think? Read other reader responses and join the debate in The Body Politic But this dichotomy between "traditionalist" and "exceptionalist" methods is artificial and exemplifies the dogmatism of the traditionalist argument. There are a wide variety of public-health methods that can be used to confront HIV infection or any other communicable disease. These methods, in the case of HIV infection, might include everything from the distribution of red ribbons on one extreme to the incarceration of all HIV-infected people in concentration camps on the other, with a number of more effective and less noxious measures somewhere in between. In order to decide which methods we should employ, we need to examine each one, use empirical data to assess the expected benefits, and balance those benefits against the costs -- the costs to society as well as the costs to individuals. Burr tries to categorize each of those methods as either "traditionalist" or "exceptionalist," but the categorization is forced.

Burr and Coburn have selectively chosen to advocate a small subset of the many public-health approaches available, stating that "other methods" haven't worked. What their approaches have in common is that they involve involuntary measures. Perhaps Burr's confusion after reading my opening statement arises from the fact that I haven't accepted his dichotomy. It is not an issue of "new" or "old," "traditional" or "exceptionalist." It is, or should be, a matter of choosing our public-health approaches based on what will produce the greatest benefit at the smallest cost. I have argued that the methods they advocate would produce minimal benefit at great cost. I have also argued that the most effective methods, those "other methods" they claim haven't worked, have in fact not been tried on a national level.

Burr dismisses the exceptionalist argument by stating that the only cost we're truly worried about is the cost in terms of civil rights. While I am still a big fan of civil rights and get nervous when I hear people talk about curtailing them for a greater social good, I would add that there are a number of more tangible costs involved in the approaches advocated by Burr and Coburn. State health officials and AIDS-prevention program directors have estimated that the implementation of Coburn's bill would require at least 265 statutory or regulatory changes nationwide and cost about $420 million per year. Furthermore, his bill is an "unfunded mandate," meaning that funds required to implement this legislation would divert funds away from public-health efforts already planned or in progress, efforts that in many cases are local ones with proven efficacy, designed and implemented by people with greater expertise in public health and greater understanding of local needs than Congressman Coburn or any other legislator could have. As for the personal costs, which Burr dismisses far too readily, they are eloquently described in Stephen Murray's commentary. I suspect that there are as many versions of such stories as there are people with HIV infection.

Since I've been accused of confusing traditionalist and exceptionalist methods, let me confuse things even more by proposing that Coburn's HIV Prevention Act is in many ways more exceptionalist than traditionalist. His bill would establish an unprecedented federal reporting policy, the first and only exception to the fact that no disease is specifically required by federal mandate to be reported nationally. There has been no request for such a mandate made by the CDC, the agency that tracks the HIV epidemic nationally. If such information were so badly needed in order to better track the epidemic, one would think that it would have been requested long ago by the epidemiologists who are charged with this task. His bill is also "exceptionalist" in that it penalizes states, and the poor who live in them, by cutting off Medicaid funding to those states that fail to comply with its reporting requirements, another unprecedented and highly punitive measure. Finally, it is "exceptionalist" in that it attempts to supersede the public-health system by legislating public-health policy. When a congressman calls for public-health policies that public-health authorities not only consider unnecessary but in many cases vehemently oppose, one has to wonder whether the call for these policies is based on political considerations rather than on sound epidemiology.

I was stunned by Coburn and Burr's repeated statements that "no one is talking about mandatory testing." Burr says that "no one who is at all credible is promoting this." Yet throughout the course of the HIV epidemic calls for mandatory testing for any number of groups have been frequent and loud. Then Burr goes on to say that he supports "routine testing," testing that I assume is involuntary since it would otherwise not differ from the status quo. The distinction between mandatory testing and routine involuntary testing escapes me. He says that the only form of mandatory testing being proposed by "credible" sources is the testing of newborns. But testing a newborn would have far less impact on perinatal transmission than mandatory testing of pregnant women, which is being called for by a number of presumably "credible" authorities. I have already discussed the reasons why such an approach is misguided.

Furthermore, despite Coburn's assertions to the contrary, his bill does call for mandatory testing. His HIV Prevention Act allows medical professionals to refuse treatment to a patient unless that patient agrees to be tested for HIV. To say this is not a form of mandatory testing is outrageous, since it means that patients are free to refuse HIV testing only if they are willing to forgo medical care. Nor does such a policy make scientific sense, since the window period between infection and seroconversion prevents HIV tests from reliably establishing current HIV status. Adherence to universal precautions is the accepted public-health approach for the protection of health-care workers. The American Hospital Association estimates that testing patients in the way Coburn suggests could cost as much as $1.65 billion annually. Yet this expensive provision is included in the Coburn bill to deal with a problem that is in fact a minuscule part of the larger epidemic: after more than a decade and a half, the total number of CDC-documented occupational transmissions is less than 50.

Virgo stretches the parallels between tuberculosis and HIV beyond all credibility. A man who refuses to take therapy for active tuberculosis, a curable disease, is a danger to anyone who rides an elevator with him, who flies on the same plane with him, or who even enters a room that he has recently left. Those he exposes have essentially no control over their risk; they can become infected passively and unwittingly. The only way we have of protecting society from such a person is to lock him up until we can render him non-infectious. HIV infection, on the other hand, despite fears to the contrary, is not easy to catch and with rare exceptions requires the active participation of both parties. Certainly to knowingly expose another human being to HIV infection is reprehensible, even if those at risk could have done more to protect themselves. Furthermore, thirty states already have laws against knowingly or willfully exposing others to HIV, and all states have laws -- relating to "assault with intent to kill" or "assault with a deadly weapon" -- that can be used to prosecute those who intentionally try to infect others.

Nevertheless, a component of Coburn's bill is to encourage the criminalization of intentional transmission, despite the fact that such behavior is already widely treated as criminal. This exemplifies what's wrong with Coburn's approach and that of other "traditionalists." Unlike us "exceptionalists," they focus on the exceptions rather than the rule. Coburn's bill has lots of expensive provisions to deal with a small handful of cases -- the occupationally infected health-care worker, the sociopath who knowingly infects others, the pregnant woman who refuses testing -- but it does little to address the real epidemic. His approach emphasizes the punitive over the preventive; it turns an infectious disease into a conflict between perpetrator and victim. Such approaches seem intuitively sound to those who view people with HIV infection as "them," but HIV is part of "us" as a society, and it will take a more comprehensive and scientifically based approach to make significant progress in controlling the epidemic.

Let me use Virgo's example to frame the problem. He proposes that someone who is HIV infected and shares needles should be incarcerated. I know many who support this position strongly; ironically, most are equally strong in their opposition to the needle-exchange programs that would obviate the need for needle sharing in the first place. I've met others who agree that anyone who exposes another to HIV infection sexually should be prosecuted, but who are quick to rally against any school board that tries to teach their children how to avoid getting infected. Stephen Murray wrote, "No one should believe that someone who opposes needle exchange and explicit safer sex educational material is concerned with empirical data or with reducing HIV transmission!" It would be easier to support the arguments of the "traditionalists" if such widespread inconsistencies didn't cause one to doubt their motives.

What do you think? Read other reader responses and join the debate in The Body Politic

Roundtable Overview

Introduction and opening questions, by Cullen Murphy

Round One -- posted on June 3, 1997

Round Two -- posted on June 19, 1997

Copyright © 1997 by The Atlantic Monthly Company. All rights reserved.
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