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The AIDS Exception: Privacy vs. Public Health
Opening Statements


"The AIDS Exception: Privacy vs. Public Health" (June, 1997, Atlantic), in which I made the case for a traditional public-health approach to AIDS, was the most difficult piece of reporting I have ever done. In various parts public health, medicine, law, science, and culture, the subject is highly resistant to empirical assessment. But in the end, given the data I present in the magazine, two things struck me. The first is that a quiet sea-change is now going on, as indicated by the comments of an infectious-disease specialist and AIDS physician at a prominent East Coast hospital who is himself gay and who whispered to me at a recent dinner party that it is time to stop treating AIDS as a political phenomenon. "It's still difficult to say out loud that, in the end, AIDS is a disease," he said, "but we're starting to say it."

The other thing is as difficult to quantify journalistically as it is important to note: fanatical adherence to one's position. A heterosexual Los Angeles AIDS doctor with whom I spoke has done studies clearly showing that partner-notification programs identify more infected people and bring them into treatment earlier (when their prognosis is better). Yet he works against the constant opposition of AIDS and gay activists. "When they hear the words 'partner notification' they just freak out and come after you," he told me. "But this is what the studies show." After nearly two years of professional interaction with numerous exceptionalists, I am still astounded at the dogmatism of many of them.

Joel Gallant responds:
"Chandler Burr is justified in objecting to the dogmatism of some exceptionalists.... 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."

See the rest of Gallant's response.

There is a constant, suspicious whiff of fanaticism present in the repetition of unverifiable hypotheses, apocalyptic scenarios, and imputations of invidious motive. For example, the possibility that Tom Coburn proposed the HIV Prevention Act of 1997 (which would require, among other things, confidential HIV reporting nationwide) for any reason other than hatred of homosexuals is simply not entertained. But as a homosexual journalist who has spent significant time talking with Coburn about his bill, I believe that this is simply paranoia; as far as I can tell, Coburn's motivation is protecting the public's health.

Roundtable Overview

Host: Cullen Murphy
Managing editor, The Atlantic Monthly

Chandler Burr
Burr is the author of A Separate Creation: The Search for the Biological Origins of Sexual Orientation (1996) and the creator and moderator of The Gay Gene, a Web site devoted to the biological research of sexual orientation. His argument for reinstating traditional rules of public health for fighting AIDS, "The AIDS Exception: Privacy vs. Public Health" appears in the June, 1997, issue of The Atlantic.

Winnie Stachelberg
Stachelberg is the legislative director of the Human Rights Campaign, the nation's largest lesbian and gay political organization. She leads a team of professional advocates in formulating and advancing HRC's legislative agenda on Capitol Hill.

Tom Coburn
Coburn represents Oklahoma's 2nd Congressional District in the U.S. House of Representatives. He recently introduced the HIV Prevention Act of 1997 which, if it passes, would require more HIV reporting and partner notification. He is also a practicing family physician who specializes in obstetrics.

Joel Gallant
Gallant is an assistant professor of medicine in the Division of Infectious Diseases at the Johns Hopkins University School of Medicine and is the director of the Moore HIV Clinic at the Johns Hopkins Hospital.

Visit our previous roundtables:

"Welfare: Where Do We Go From Here?" (March, 1997)

"Immigration: One Nation, Inhospitable?" (November, 1996)

* * *

What do you think?

Join the debate in The Body Politic. In Round Two (coming June 18), participants will respond to selected reader responses.
There are many exceptions -- I would cite the ACLU's Matt Coles as one example of a committed exceptionalist who makes his case with patience, intelligence, and the acknowledgment that he might, just possibly, be wrong. But overall many exceptionalists' hypothetical arguments, and their tone, consistently remind me of the feeling I get while reading about the ultra-conservative militia groups, which serves to reinforce in my mind what the data indicate: we need a fundamental reevaluation here. To quote The Atlantic's editors, "Some will angrily demur [from traditionalist arguments]. We would argue that with lives at stake, scrutinizing orthodoxy from time to time is simply prudence."

This orthodoxy (the word's theological sense is not completely out of place here) deems current public-health approaches a success even though an estimated 500,000 people are infected with HIV and don't know it. Only true believers could argue this. We do not use disease control for the flu. Why? Because it is so easy to catch and because it is rarely fatal. On the other hand AIDS -- which is quite difficult to catch as diseases go -- is a perfect candidate for disease-control methods. To implement them, however, we need to know who is and who is not infected.

Winnie Stachelberg responds:
"Burr seems to believe that the government, by means of a woefully under-funded and under-staffed public-health system, must force people to 'do the right thing' (that is, get tested, notify their partners, change their behavior), because, left on their own, people won't do it themselves. The evidence, as I have cited and Joel Gallant has indicated, does not back up that assumption."

See the rest of Stachelberg's response.

The orthodoxy then repeats the exceptionalist article of faith that finding out who is infected (confidential name reporting) and disease control will "drive the epidemic underground." Let's grant for the sake of argument that this will happen. I counter that exceptionalism itself makes this happen. Convince the population that they will be grievously injured if they cooperate in the public-health procedures necessary for stopping the epidemic, and inevitably this conviction will become that population's central fixation, despite the objective fact that confidentiality violations have been rare and that powerful, clear civil-rights protections are on the books. The protections are not perfect -- they are unwieldy in the way the law is always unwieldy -- but once one has been infected with AIDS perfection is no longer an option and demanding it is an absurdity. The public-policy challenge is to fight the discrimination at the same time that we fight the virus, not to assume the permanence of the discrimination, exalt it, and argue backwards from there against effective disease control.

I am a 33-year-old gay man whose entire adulthood has been lived during the AIDS epidemic and who has been thoroughly immersed in the orthodoxy by the AIDS leadership. My coming out in 1988 included my first test for HIV (I tested, and today test, negative). I made certain, because it had been drummed into my head, to go to the Whitman Walker Clinic in Washington, D.C., where testing is anonymous, as opposed to confidential (in which case your name goes to the public-health authorities, giving them more precise data and the ability to follow up on you personally if warranted). I had no thought for anyone else's health because I had been taught to have none. The problems of disease control in the general population were no more relevant to me than they were to the exceptionalist public-health policies of the clinic or the city that tested me. This is appalling selfishness. AIDS is not merely my personal problem cum civil-rights issue. AIDS is a disease, and my HIV status has implications for people other than me.

Cullen Murphy's last question -- forcing Tom Coburn and me to identify the most telling exceptionalist argument -- is an excellent exercise, because the fact is that exceptionalists, in what they have done with AIDS, have made an immense and important contribution to effective public health: we now understand that AIDS is more than just the microbes that make up a disease. Traditional methods are indeed effective on microbes, but AIDS has taught us that these methods are, by themselves, insufficient, and that we need to deal with people in all their complex, infuriating, illogical manifestations. Good public health includes protecting civil rights, using mass-media campaigns to create behavioral change, and increasing our focus on preventative health, such as needle-exchange and prenatal-care programs.

As an AIDS doctor said to me, "In the end, the HIV and STD epidemics are unnecessary. No other industrialized country has these problems: industrialized Europe and Australia and New Zealand have gone after these diseases with traditionalist methods and with non-traditionalist, new methods supported by the exceptionalists, and have essentially taken care of them. Sweden does it all: they do needle exchange and contact tracing, and at the same time they do drug treatment on demand and absolute protection of civil rights and access to health care. You've got to have the whole package. The U.S. is doing a miserable job by any standard: we have not taken the tough traditional public-health steps that are necessary to contain AIDS, and we haven't instituted the new policies pointed out by our experience with this disease."

I have questions, though, for Coburn about his proposed HIV Prevention Act, which, if passed, would result in a more traditional public-health policy for HIV/AIDS. I once asked Coburn why he opposed needle exchange and cited a National Academy of Sciences study reported on the front page of The New York Times that found it effective in slowing HIV. His response was simply "I haven't seen it." I want him to give me a better response. AIDS activists deplore the provision of his bill that gives doctors the right to test patients or to refuse to perform certain medical procedures. When I asked him about this he made an excellent case that its purpose, in fact, is to protect patients -- if doctors do not know their patients are HIV-infected, they may prescribe a contraindicated drug, with devastating effects. Yet the actual bill talks about any "medical procedure that would place the health [italics mine] professionals at risk." I want Coburn to address this.

Tom Coburn responds:
"To answer Burr's question about the part of my bill that covers doctor-patient relations, physicians should ideally have the right to test any patient. This protects patients because it assures that any procedure performed is made with knowledge of patients' HIV status, protecting them from unnecessary complications."

See the rest of Coburn's response.

And I want him to justify to the public why, although his bill will identify many infected people, many of them uninsured, he does not support universal health coverage in a country with an estimated uninsured population of fifteen million.

But the fact that these things need to be addressed does not invalidate Coburn's bill. It is part of "the whole package," as much as the AIDS activists might dislike it. The test, I believe, of both the tenor and rigor of the exceptionalists' arguments will be their response to a balanced, thoughtful, whole-package assessment of public policy and AIDS. Exceptionalism has contributed greatly to public health. And AIDS, particularly in the 1980s, was a huge civil-rights issue as well as a disease. But vested self-interest and a static view are deadly to exceptionalists like Winnie Stachelberg and traditionalists like Tom Coburn alike. The question is: Will they both be able to put the whole package together?

Return to the top of Round One -- Opening Remarks.


Rather than frame the debate over HIV/AIDS prevention by posing "pragmatic" (and supposedly successful) public-health strategies against "principled" (but supposedly less successful) ones, we should think solely in terms of disease prevention and management. How to address the challenges posed by the AIDS epidemic is neither a question of pragmatism nor principle. It is, plain and simple, a question of public health. To continue to discuss the epidemic in other terms does a disservice to all of us trying to combat this deadly disease.

It is of great concern that half of the people living with HIV in this country do not know their status. We must do all we can to encourage people to get tested; a widespread social-marketing campaign is essential. But equally important is access to testing sites at which people can voluntarily (and, if necessary, anonymously) ascertain their HIV status. As this epidemic nears its third decade better targeted-education programs, better access to care and treatment (including drug treatment), and better needle-exchange programs are absolutely required.

Those who advocate mandatory testing, named reporting of infection, and partner notification as examples of more strenuous public-health efforts believe that we are worse off because we have not employed these methods in the past. The truth is that twenty-six states have HIV-reporting laws and that all fifty states have partner-notification programs in place. Those strategies are not panaceas, however; they have not proven to be the answer in stemming recent surges in diseases such as syphilis and gonorrhea. The CDC has reported that since 1989 the rates of primary and secondary syphilis have increased by at least 40 percent across the United States and by up to 293 percent in some urban areas.

Tom Coburn responds:
"Today we have the lowest number of syphilis cases since the 1950s. Public-health officials credit aggressive partner notification as one of the fundamental means of accomplishing this dramatic reduction. In denying the role of partner notification in syphilis's decline, Stachelberg discredits her arguments."

See the rest of Coburn's response.

While the provisional 1996 data suggests that new cases of syphilis have fallen, the reasons cited include the cyclical nature of the disease and more aggressive treatment efforts by state and local health officials. The assertion, therefore, that these more "strenuous" public-health measures will automatically reduce HIV transmission is based on faulty assumptions about the efficacy of these strategies.

While it is true that the recent developments in treatment regimens offer hope to many people living with HIV, those regimens do not constitute a cure, are hugely expensive, and, given the nature of our health-care system, are not available to all who may benefit from them. Identifying and reporting a person as HIV-positive in and of itself does not in any way promote the changes in behavior which remain the only successful means of preventing HIV transmission. Nor do identification and reporting guarantee access to medical care. Given those limits, why is it so important to the traditionalists that the government know who is and who is not HIV-positive? Until the traditionalists can answer that question the HIV/AIDS community will rightly remain opposed to any efforts that force people to provide that information.

The traditionalists underestimate the complexities of HIV infection and the impact that mandatory partner notification and the creation of a list of people living with HIV will have on the willingness of people to come forward and get tested. When the state of Oregon switched from confidential

Chandler Burr responds:
"The public-health orthodoxy defended by Stachelberg and exceptionalists like her is not, at its most fundamental level, about the containment and eradication of communicable diseases in populations. It is about civil rights. It is about protecting people from political and emotional violation and not really about protecting them from disease."

See the rest of Burr's response.

name-reporting to anonymous testing, the number of individuals seeking testing increased significantly. A recent study of HIV-infected drug users found that 63 percent of those interviewed would not reveal the correct names and addresses of their partners owing to social stigma, rejection, and other factors. A recent study of Baltimore health-care providers revealed that 24 percent of those providers had at least one female patient who experienced physical violence following the disclosure of her HIV status to a partner.

The public-health system must have the trust and cooperation of those at risk for HIV infection in order to intervene successfully. Many public-health departments have developed that trust and fostered that cooperation by recognizing the concerns that people in the HIV and AIDS community have expressed over time. This partnership has led to strategies that track and prevent HIV infection. The traditionalists call these strategies "alternative" or "exceptionalist"; those fighting on the front lines of this epidemic call them effective. These strategies are based on a community-prevention planning process and include: culturally specific, long-term prevention programs targeted toward at-risk communities; voluntary testing; unique, non-named identifiers to report HIV; the availability of anonymous test sites; and voluntary, non-coercive partner-notification programs that recognize complex social dynamics and are sensitive to the needs of historically marginalized communities.

The efforts of the HIV/AIDS community have led to many improvements in how this country deals with complicated social and health issues, including faster approval of new drug treatments, creation of high-quality systems of care, coordinated research efforts, and prevention programs that work. These are the result of a healthy questioning of "how things have always been done" and of the partnerships that have developed among and between affected communities, public-health experts, government officials, and elected leaders. The programs, policies, and strategies that these partnerships have created, including HIV-prevention efforts, should be evaluated based on what works at the local level and not on someone's definition of "traditional" strategies, the success of which is spotty at best.

The most telling insight of the traditionalists is their argument that the nature of HIV is changing. They correctly assert that using AIDS as the marker for studying this epidemic is not as useful as it once was. Newly available drug treatments mark a sea-change in how individuals and society as a whole view HIV infection. People are living longer with AIDS, which means that deaths are decreasing. But this does not mean that new infections are also decreasing. Without a system to measure HIV incidence we are missing a key piece of information to combat the HIV epidemic into the next century. In order to understand the nature of the epidemic at the front end of the disease progression, it is more important than ever to get people into treatment earlier and to identify barriers to care.

Where the traditionalists go wrong is in using the need for "front-end" data as a justification for mandatory testing, name reporting, coercive partner-notification programs, and the like. There are many ways to obtain the needed information without resorting to such strategies.

Chandler Burr responds:
"Stachelberg makes the alarmist assertion that traditionalists are promoting 'mandatory testing' for everyone. This is a lie. No one who is at all credible is promoting this. Coburn is not -- as everyone who looks at his bill will know -- and if this accusation is not leveled at Coburn, at whom is it aimed?"

See the rest of Burr's response.

Maryland and Texas, for example, have instituted systems that distinguish people with HIV by a unique anonymous identifier. Other areas are using sampling methods and laboratory-initiated case finding. A consensus is developing in the HIV/AIDS community on the need for more and better epidemiological information, and state and local health departments are working with their communities on the best ways to get it. We should let that process take place without mandatory, one-size-fits-all solutions to a very complicated issue. Let us allow public-health officials and affected communities to decide at the local level the best ways to move forward -- as we have since the epidemic began.

Return to the top of Round One -- Opening Remarks.


While no cure exists for HIV infection, we do know enough about the virus to prevent its spread. But we have failed to do so. The fact that about half of the nearly one million people infected with HIV in the United States are thought to be unaware of their status is proof that we have failed to adequately address the HIV/AIDS epidemic.

Whether owing to principle or pragmatism, in dealing with HIV we have abandoned the public-health procedures that have been successful in curtailing other epidemics. As Chandler Burr points out in his article for The Atlantic, while AIDS cases must be reported by name in all fifty states, infection with HIV does not. Why are reporting, notification, and other traditional public-health policies so important to us "traditionalists"? Because they work.

Reporting to local health authorities the names of those infected with a certain disease allows scientists to access and study that disease. It enables those responsible for disease control to determine more accurately the extent of an epidemic, rates of progression, direction of spread, possible changes in transmissibility, and other critical factors. This information in turn allows for the development of long-term strategies based on reliable data

Winnie Stachelberg responds:
"Coburn implies that the CDC receives the names of people living with AIDS.... The fact is that neither AIDS nor any other disease is reported to the CDC with patient-identifying information. Reporting of disease is a state-level function, which is where it should remain, without unnecessary costly mandates from the federal government."

See the rest of Stachelberg's response.

and the development of effective and targeted prevention-education messages. Currently more than fifty diseases -- including AIDS -- are reported to the CDC.

Partner notification is important because it is the only timely way to alert those in danger of infection. It allows for early medical treatment for those who are infected and enables others to avoid infection.

The latest treatments now available for HIV make notification and early diagnosis even more crucial. Many of the world's top scientists now believe that with the right combination of drugs it may be possible to transform HIV from a virus that becomes a terminal disease into a chronic disease like diabetes. However, the success of these drugs depends upon starting treatment early. Sadly, many aren't aware that they've been infected with the HIV virus until they become sick with AIDS. By this point they have missed out on the medical care that could have prolonged their lives, and they may have unwittingly infected others.

When such therapies are available, who could deny those who have been unknowingly exposed to HIV the right to know that they may be infected? If we were discussing Ebola instead of HIV, would those against traditional public-health practices still oppose reporting and partner notification?

As Cullen Murphy says, AIDS activists argue that these practices are counterproductive because they may frighten those at risk from getting tested and drive those who are infected underground. The fact is that there is no evidence from any of the twenty-six states with partner-notification requirements that reporting or notification discourages individuals from being tested. (It should not be overlooked that these states also tend to have the lowest number of HIV/AIDS caseloads.) North Carolina, for example, just recently eliminated anonymous testing, and HIV testing increased by 45 percent. These same arguments have been used against screening blood-bank donors, military, Job Corps, and foreign-service applicants, and pregnant women -- but have never been proven true.

It could be true that some people with HIV/AIDS may choose to avoid the health-care system, but that is not a strong enough argument to suspend proven policies that do work and have been successful in controlling the spread of epidemics.

I agree with the exceptionalist argument that because of the stigma associated with HIV those with the disease have legitimate concerns about discrimination. But diseases such as herpes, syphilis, gonorrhea, and tuberculosis all have negative stigmas, yet they must be reported to local health authorities. That is why every state has strict confidentiality laws in place for all medical records. Some states have even enacted specific laws to protect HIV-status information. The Americans With Disabilities Act also ensures additional protections against discrimination.

While these laws cannot change people's attitudes, those with HIV can look to the success of other

Joel Gallant responds:
"Coburn's bill does not really address the overarching problem [of AIDS] 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."

See the rest of Gallant's response.

disease-reporting efforts for reassurance of confidentiality. Every state, for example, has reported AIDS cases to their state public-health department and the to CDC for sixteen years, without incident. Why would this change with reporting HIV?

I believe that the case for treating HIV infection the same as other infectious diseases has never been stronger. That is why I introduced the HIV Prevention Act of 1997, which would require HIV reporting and partner notification. The bill has been endorsed by the American Medical Association and numerous public-health officials across the country. Certainly it is not a cure for HIV, but along with new drug treatments it may be our best hope for fighting the disease until a cure is found.

Return to the top of Round One -- Opening Remarks.


Response to Question One

Our response to the AIDS epidemic has been woefully inadequate. One need look no further for convincing proof of our deficiency than the fact that the majority of HIV-infected Americans aren't aware they're infected. Had certain traditional public-health measures been applied at the onset of the epidemic, they might have been effective in slowing the spread of HIV; even now, implementing them would still be useful. Those measures that I support are not coercive and need not violate civil rights or lead to discrimination. They are well-tested, highly effective voluntary measures that we've merely paid lip service to for the last decade and a half. They include education, drug treatment, needle exchange, and widespread voluntary testing. Such approaches would undoubtedly prevent and detect more cases of HIV infection and would be more cost-effective than the more coercive and involuntary measures now being proposed.

The reason that people don't know they are infected is not that they refuse to be tested despite the earnest entreaties of physicians and public-health officials. The acceptance rate for voluntary HIV testing is extremely high when the reason for the test is explained and the issue approached with sensitivity. At the Johns Hopkins Hospital, for example, virtually the only pregnant women who don't consent to voluntary testing are those who already know they're infected. Physicians who suggest an HIV test to their patients are rarely met with refusal. But usually patients are never asked.

What keeps people from being diagnosed and treated is ignorance. In the United States we've chosen to combat that ignorance with public-service announcements that provide bland, meaningless slogans and 800 numbers, red ribbons, and so-called "AIDS education" in the classroom. This education censors discussion of what our children need to know: how one becomes infected with HIV, and how one avoids it.

Our ignorance is further fostered by medical professionals who too often think of HIV only in the context of the now obsolete "risk groups" of the 1980s. Patients who come through emergency rooms and doctors' offices with sexually transmitted diseases, pneumonia, shingles, and other infections that suggest the possibility of HIV infection are still offered testing only if they're gay men or intravenous drug users. By testing only those who are members of so-called "risk groups" or by waiting until patients are sick, we miss the diagnosis in a large proportion of the infected population at a stage when treatment could offer enormous benefits. Closing this gap does not require legislation; it requires greater awareness on the part of clinicians.

I propose that before we resort to draconian measures to combat the AIDS

Chandler Burr responds:
"[Gallant] opposes 'draconian measures restricting the civil liberties of our citizens.' What draconian measures? Please, we need a bit of perspective and absence of melodrama. Routine testing for a virus is draconian? What about for the dozens and dozens of viruses and bacteria we routinely test for? This fear is, at this point, simply self-perpetuating hysteria."

See the rest of Burr's response.

epidemic by restricting the civil liberties of our citizens we should first try a few of the voluntary measures that have been so successful elsewhere but that Americans have largely ignored. We should provide explicit and targeted education about HIV prevention and the reasons for getting tested. We should expand voluntary testing to new sites, especially now that HIV-test results can be provided immediately without the need for drawing blood. (We still don't offer voluntary HIV testing in most inner-city emergency rooms, where the seroprevalence is shockingly high and where a large proportion of people at high risk for HIV infection obtain their primary care.) We should admit that adolescents are sexual beings who will not become more sexual by learning how HIV is transmitted and prevented. We should recognize that needle exchange and drug treatment don't require more study; rather, they work and should be implemented. We should help clinicians to expand their notions of who might be infected, and we should teach them how to discuss sexuality, drug use, and HIV infection in a sensitive way that won't alienate their patients.

There are certainly precedents for restricting civil rights in the name of public health. We can still lock people up if they have active tuberculosis and refuse to take their medications, for example. Such measures are justifiable when an individual knowingly and willfully places the public health or the health of another in jeopardy. But most people take their medications and don't need to be locked up. As a physician in Maryland I have the right to inform my patients' sex partners of the patients' HIV status without their consent. In seven years of caring for HIV-infected patients in this state I've only had to do that once -- when my patient refused to do it himself.

I'm as concerned about the failure of our public-health response to the AIDS epidemic as the most hardened "traditionalist." And I'm not such an "exceptionalist" that I would oppose more coercive measures if I were convinced that they were the only way to stop the spread of HIV. But our society's puritanism and eagerness to view disease as a moral issue have prevented us from attempting a number of basic prevention efforts that are both voluntary and effective. Until they are tried and have been shown to fail, the call to suspend civil liberties seems premature.

Response to Question Two

Partner notification and contact tracing are important, but efforts to make them more systematic and non-voluntary are unlikely to be either effective or cost-effective, and may in fact be counterproductive. Let's look at examples from the real world.

Intravenous drug users can be asked to divulge the names of their needle-sharing partners, but it seems rather far-fetched to expect a high yield from that approach. Even assuming their partners are known to them, which is often not the case, the current legal and moral climate with respect to drug use would understandably inhibit most people from being forthcoming to a public-health official. Infected individuals can simply state either that they don't share needles or don't know the names of their needle-sharing partners, and the so-called contact-tracing process comes to an immediate halt.

In most cases tracing and notifying sexual contacts presents a similar problem. Unless a patient is legally married, our ability to identify sexual contacts is dependent entirely on the patient's willingness to divulge names. That leaves us with the rare case of the married couple in which an HIV-infected husband refuses to inform his wife, or vice versa. I suspect that most legislation involving mandatory partner notification is driven entirely by such cases, which make for exciting headlines or day-time talk-show discussions but occur only infrequently.

Of course, mandatory partner-notification legislation has an additional cost, since it may discourage some individuals from getting tested. Let's imagine the case of a married man who fears that he acquired HIV infection from sexual encounters with men which his wife is not aware of. Imagine the enormous psychological barriers he faces as he considers getting tested -- fear of learning that he's HIV-positive, guilt over the possibility that he may have infected his wife, anxiety that his sexual preference will be revealed. Now add to those barriers the certainty that if he is HIV-positive, his wife will be notified by the public-health department. That last barrier may be the one that keeps him from being tested. Whether or not one can feel sympathy for this man's predicament, the potential for delay in testing further jeopardizes not only his own health but that of his family. Under the current system the fear and anxiety associated with being tested and being informed of a diagnosis of HIV infection can be separated from the anxiety associated with partner notification. Partner notification can then be addressed at a more appropriate time by counselors or clinicians who have a personal relationship with the patient.

Another example of misguided and counterproductive approaches to HIV prevention and detection is the mandatory testing of pregnant women.

Tom Coburn responds:
"The HIV Prevention Act does not mandate involuntary testing of individuals except in cases of rape and sexual assault. The programs established under this Act will rely on the voluntary cooperation of individuals in providing names of potentially infected contacts for notification. This is now being accomplished successfully in twenty-seven states."

See the rest of Coburn's response.

The acceptance of voluntary testing among pregnant women has been shown to be enormously high. The acceptance of antiretroviral therapy in order to prevent perinatal transmission is also high. Legislation designed to screen for HIV among that small proportion of women who refuse testing can only serve to drive more women from prenatal care, which would almost certainly offset any benefits gained from the slight increase in HIV detection that could be expected to result from such a policy. Furthermore, for involuntary testing of pregnant women to be truly beneficial we would have to mandate forced antiretroviral therapy of infected mothers, a step that I hope our society is not ready to take. Meanwhile, despite the fact that the incidence of new HIV infection is rising faster among heterosexual women than in any other group in the United States, pregnant women are frequently not offered voluntary testing unless they are members of a traditional "risk group," a case-finding strategy that has been demonstrated to miss a high proportion of HIV-infected women.

In short, leaving aside civil-rights issues, the benefits that could be expected from mandatory partner-notification programs and other systematic case-finding efforts would probably be marginal. At the same time, such programs would be expensive, especially if examined in terms of cost per case detected, and might lead to the opposite of the desired effect -- a reduction in the number of people at risk who seek testing and treatment.

Response to Question Three

The traditionalists point out that society has changed since the early years of the AIDS epidemic; therefore, exceptionalist arguments based on the fear of discrimination are less persuasive now than they were in the 1980s when such discrimination was common and widespread. With each year the reasons for making an exception of HIV infection become weaker. Furthermore, traditionalists argue correctly that the health benefits associated with early diagnosis of HIV infection are much greater now than they were ten years ago. Not only does therapy for HIV infection delay progression of HIV disease, but it clearly prolongs survival and reduces infectivity.

Such arguments have validity. The flagrant cases of discrimination, the hate crimes, the shunning of HIV-infected individuals by their communities, have thankfully become less common than they were in the 1980s. The law protects those with HIV infection against some kinds of objectifiable discrimination. The more subtle forms, while they still exist, have been rendered less harmful by the sheer size of the epidemic. There is power in numbers, and in some large urban areas HIV infection has become a fact of life, less capable of inspiring the irrational terror and hatred that was once widespread.

As refreshing as societal changes seem, they are quantitative, not qualitative. Discrimination against HIV-infected individuals still exists, especially in communities where HIV infection is uncommon. People still lose their jobs, are denied housing or insurance, and are ostracized by their families when it becomes known that they are infected. Even with the best legal safeguards, ignorance is widespread and human error inevitable. Proponents of mandatory testing rarely accompany their proposals with legislation designed to decrease the abuse of the information obtained or to prevent discrimination on the basis of HIV status.

Even if legal or official forms of discrimination could be completely eliminated, HIV infection would continue to carry an enormous social stigma that might easily inhibit people from getting tested if their test results were more likely to be used in ways over which they had no control. If our goal is to prevent the transmission of HIV infection and to identify people early in the course of their disease, erecting greater barriers to its diagnosis is not the solution. The solution lies in improving access to counseling and testing, expanding our educational efforts, and doing what we can to further destigmatize HIV infection. The assertion that early diagnosis of HIV infection now leads to life- and health-sustaining therapy is true, but does not in itself justify the imposition of government mandates and involuntary measures. Imposing bureaucracy and coercion on the struggle to control the HIV epidemic can only place more obstacles between us and our goal.

What Do You Think?

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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