The "names debate": the case for national HIV reporting in the United States.

• Author: Gostin, Lawrence O.
• Position: Symposium on Health Care Policy: What Lessons Have We Learned from the AIDS Pandemic?

INTRODUCTION

1. THE HISTORICAL DEVELOPMENT OF REPORTING AS A PUBLIC

   HEALTH PRACTICE

   1. Early Reporting Practices

   2. The Tensions Between the Practice of Medicine and

      Public Health

   3. The Inception of the Modern Epidemic: National

      AIDS Reporting II. THE CHANGING FACE OF THE AIDS EPIDEMIC

   1. Developments in Medical Treatment

   2. Perinatal Transmission

   3. Effects on Epidemiology III. HIV/AIDS REPORTING: CURRENT STATUS

   1. AIDS Surveillance

   2. HIV Surveillance TABLE A: HIV/AIDS REPORTING AMONG STATES AND THE

      DISTRICT OF COLUMBIA IV. PUBLIC HEALTH JUSTIFICATIONS FOR A NATIONAL SYSTEM

      OF HIV REPORTING

   1. Monitoring the AIDS Epidemic

   2. Targeting Prevention and Other Services

   3. Linking HIV-Infected Persons with Treatment

      Opportunities, Educational Services, and Partner

      Notification Support Services

   4. Just Resource Allocation

   5. Eligibility for Governmental Benefits V. THE SOCIAL IMPACT OF HIV REPORTING

   1. The Impact on Voluntary Testing and Treatment:

      The Importance of Alternative Test Sites

   2. Discrimination

   3. Privacy

      1. Legal Rights to Privacy

      2. Privacy and Security in the Maintenance

         and Use of HIV Registries

      3. Ethical Issues Concerning Privacy VI. THE "NAMES DEBATE": NAMED REPORTING VERSUS

         UNIQUE IDENTIFIERS CONCLUSION

         INTRODUCTION

         Throughout the history of contagious diseases in the United States, there has been a basic tension between traditional public health and civil liberties.(1) Proponents of a traditional public health approach have argued that systematic government intervention has been most affective in curtailing disease epidemics.(2) Traditional public health measures include testing and screening for infection, notification of those at risk of infection, and reporting infected persons to the health department.(3) The health department is also empowered to subject individuals to mandatory medical examinations and treatment, directly observed therapy, isolation, or quarantine.(4)

         Those who have opposed traditional public health powers have, instead, relied on policies that optimally protect individual autonomy, privacy, and liberty.(5) Adherents to a civil liberties approach argue that respect for rights and freedoms represents a transcending human value. A civil liberties perspective in the context of disease epidemics tends to focus on well-informed individuals exercising the tight to self determination.(6) Under this view, public health's essential functions are to provide education and counseling to help individuals to make more informed decisions to reduce their risk.(7) Public health should also provide the means for self protection such as condoms for persons who engage in sex and sterile syringes for those who inject illegal drugs.(8)

         This historical tension between civil liberties and public health has sharpened in the modem HIV epidemic. To many (particularly ideological conservatives) the pendulum has swung decidedly in favor of civil liberties and against public health.(9) This view, often referred to as "AIDS Exceptionalism,"(10) holds that traditional public health policies that have long been effective in reducing epidemic disease are not used in curtailing HIV infection.(11) The explanation offered is that public health officials have deferred to civil libertarians and community activists, thus failing to take measures known to prevent disease transmission.(12)

         This characterization of the modem HIV epidemic is misplaced because it relies on at least two unproved assumptions. First, AIDS exceptionalists assume that traditional public health measures such as compulsory testing, partner notification, and reporting have been historically effective and would continue to be effective if routinely applied in the AIDS epidemic.(13) Even if they were effective in the past, there exists distinct dissimilarities between HIV/AIDS and other infectious diseases that may justify differential responses.

         Second, AIDS exceptionalists assume that traditional governmental interventions will have no adverse effects on populations at risk of disease.(14) However, by violating the right to autonomy and privacy, it is possible that persons at risk of HIV disease would be dissuaded from constructive engagement with public health and medicine, thus jeopardizing the health of communities.(15) Modem public health professionals often believe that coercive strategies would undermine their efforts to prevent risk behaviors, and would drive the epidemic underground.(16) According to this view, public health and human rights are mutually reinforcing; affording rights and dignity to women, injecting drug users, gay men, and others, is considered an essential public health strategy.(17) Public health officials, then, embrace a civil liberties approach not necessarily for the intrinsic value of human freedom, but because it is necessary for optimal health outcomes for populations.

         The historical divisiveness between traditional public health and civil liberties can perhaps best be illustrated by disease reporting. Mandatory reporting of diseases predated the founding of the republic.(18) A Rhode Island statute of 1741 required tavern keepers to report to local authorities any patrons known to harbor contagious diseases.(19) Ever since, disease reporting has been ubiquitous, a standard method of public health surveillance that is adopted for nearly fifty modem health conditions.(30) Reporting is considered essential to public health because it enables reliable tracking and investigation of the incidence and prevalence of disease.(31) Consequently, it is thought to provide a scientific basis for prevention activities, targeting of resources, and links to counseling and health services.(32)

         Reporting, however, is deeply troubling to individuals, communities, civil libertarians, and to a certain extent, the medical profession.(33) Reporting requires notification of a person's name, identifying personal characteristics, health status, and risk behaviors to government.(34) Government maintains this highly sensitive information in paper files and, more recently, in computer databases.(35) Named reporting also by its nature requires a breach of the therapeutic relationship, because the physician, by law, must report confidential information to the health department.(36) It is for this reason that medical organizations have historically resisted disease reporting.(27)

         The HIV/AIDS epidemic has engendered a heated debate about the use of "names."(28) HIV reporting has evoked bitter political and social controversy and impassioned community resistance.(29) The first requirement for named HIV reporting, in Colorado, and the early public health proposals for HIV surveillance in the mid-1980s ignited a firestorm of community protest.(30) Civil libertarians and gay organizations opposed named HIV reporting because they did not trust the government to maintain sensitive registries(31) and they were concerned about political retribution, potential invasions of personal privacy, and discrimination in employment, housing, and insurance. "Names" have always been a powerful symbol in AIDS politics. The "names" quilt has systematically honored persons who have died of AIDS, and it was at one time unthinkable that government would collect, store, and use the identities of persons living with this stigmatic infection.

         Critics, on the other hand, have reacted with incredulity at the reluctance of public health officials to implement a national system of named HIV reporting.(32) Named reporting is required for virtually all significant sexually transmitted and communicable infections in the United States.(33) Most reporting laws, moreover, require the collection of names, and notification at the earliest stages of infection.(34) By contrast, only thirty-one states require reporting of adults and adolescents who test positive for the HIV antibody, representing a relatively small portion of all cases of HIV infection.(35) Why, it is repeatedly asked, do public health officials shy from adopting policies concerning HIV/AIDS that they have not hesitated to use for most other diseases?

         We have long opposed named HIV reporting for many of the same reasons offered by the community of persons living with HIV/AIDS.(36) HIV infection, however, was at one time quite distinct from other infectious diseases. There were strong and justifiable reasons for rejecting named reporting: HIV infection was not transmissible through the air like tuberculosis; it was not treatable like hepatitis; and persons could not be rendered non-infectious as they could with syphilis or gonorrhea.(37) HIV/AIDS was also unique because it engendered the kinds of fear and associated discrimination that demanded privacy and respect for human rights. We have changed our mind about named HIV reporting, not because we have changed, but because the epidemic has changed. We value civil liberties but, perhaps more important, we value the health and lives of persons living with HIV/AIDS.

         Our nation's surveillance system has to date relied on reporting patients with AIDS as defined by the Centers for Disease Control and Prevention (CDC). AIDS reporting focuses on the most advanced stages of HIV disease, which, in the absence of effective treatment, develop on average ten years after initial infection.(38) Consequently, the AIDS reporting system provides a snapshot of a decade-old epidemic. Innovative antiretroviral therapies are now further delaying the progression of HIV disease, thus significantly affecting trends in AIDS reporting.(39) The compelling need for accurate monitoring of HIV infection and for effective medical and public health interventions mandates a fundamental reevaluation of AIDS surveillance. In this Article, we present the case for a national system of named HIV reporting in the United States.

         This Article systematically examines the public health benefits and the individual burdens presented by a national system of named HIV reporting. Part I discusses the historical...