"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.
Host: Cullen Murphy
Managing editor, The Atlantic Monthly
"Welfare: Where Do We Go From Here?" (March, 1997)
"Immigration: One Nation, Inhospitable?" (November, 1996)
* * *
There are many exceptions -- I would cite the ACLU's Matt Coles as
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
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
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.
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.
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.
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
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.
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
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
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
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.
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.
Introduction and opening questions, by Cullen Murphy
Round One -- posted on June 3, 1997
Copyright © 1997 by The Atlantic Monthly Company. All rights reserved.