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HIV: Testing, Screening, and Confidentiality - An American Perspective

By Edward P. Richards, III, J.D., M.P.H.*

(Written in 1997, published in Erin, CA and Bennett, R, eds. HIV and AIDS; Testing, Screening, and Confidentiality, Oxford (1999))

Introduction

The story of HIV[1] testing, screening, and confidentially in the United States is like the wise men and the elephant: what one sees depends on one's perspective and prior experience.  A civil liberties lawyer concerned with the privacy of infected individuals would find the United States approach a great success.  A medical care provider concerned with the spread of HIV and the prompt treatment of infected individuals would see many lost opportunities.  A public health specialist concerned with global communicable disease surveillance and control would see a disaster.

In this chapter I describe HIV testing, screening, and confidentiality in the United States. In keeping to this book's overall focus on testing, screening, and confidentiality, I have not dealt with health care services for persons with AIDS, AIDS education programs, drug development and clinical trials, or basic science research.  This narrow focus ignores much that is commendable, while, for better or worse, highlighting the issues which the United States has handled most poorly.

HIV policy in the United States is important because it has dominated public health discourse in the United States for nearly 15 years, and because the United States has a disproportionate impact on disease control programs throughout the world. Many of the gains in world communicable disease control made in the 1960s and 1970s are being lost.[2] How much of this is because HIV policy in the United States has focused on individual cure and molecular medicine, thus discrediting disease control and surveillance? If these policies are wrong, if we do not draw the proper lessons from the HIV epidemic, then we will not be prepared for emerging infectious diseases[3]

The Demographics of HIV in the United States

The first cases of what would be named AIDS were identified in the United States in 1981. The story of AIDS and confidentiality usually begins at this point, and the story of testing and screening begins in 1985, with the development of the first tests for antibodies to HIV.  In most key ways, the story was over quickly: the core policies of the Federal government have shifted little since the mid 1980s, and the divisions between states that were evident in 1987 mostly persist.  More critically, what were to become our HIV policies, and their epidemiological consequences, were already determined before the first case of AIDS was identified.

Demographics drove both the epidemiology of the HIV epidemic, and the political responses to it.  While the United States has a strong Federal government, the individual states are surprisingly heterogenous, both politically and demographically.  The pattern of emergence of the HIV epidemic reflected the differences between large cities and towns, and the difference between social norms on the east and west coasts and the rest of the United States. HIV was originally concentrated in several metropolitan areas on the coasts: San Francisco, Los Angles, Houston, Miami, and in the East Coast Metroplex from Baltimore through Washington DC, New Jersey, New York City to Boston.

HIV was clustered in these cities because they had large IDU (intervenous drug user) and gay communities in the late 1970s when HIV entered the United States. While all communities in the United States have gay men, it was these cities that provided the bath houses that made possible the high frequency, anonymous sexual contacts necessary to rapidly spread HIV.[4]  These cities also had the critical mass of IDUs to support shooting galleries and other practices that increased the sharing of needles and thus the transmission of HIV.  HIV has spread widely since 1981, but it remains concentrated in the original cities of origin.

These demographics are important because public health policy in the United States is driven by the cities and states, not the Federal government.  Rather than uniting the country in a common public health strategy, HIV further splintered decisionmaking, giving the United States separate policies for each of the 50 states, plus independent policies in several major cities. For example, some states require HIV reporting to public health authorities, many do not. Many states test and identify prisoners with HIV, but some do not.  Some states carry out traditional contact tracing to identify and warn persons who have been exposed to HIV, most do not.  All states have laws governing the confidentially of HIV-related information, consent for testing, involuntary testing, and screening for HIV. No two states have the same laws on these matters.

There are some general patterns.  None of the states with large numbers of HIV cases requires named reporting, screens and identifies HIV‑infected prisoners, or does contact tracing. These states also tend to have the most intrusive privacy laws limiting the disclosure of HIV‑related information, and among the best individual treatment and support programs for persons with AIDS. From one perspective, these states, because of the large number of HIV cases, and thus the strength of their political advocates, are more sensitive to the rights and needs of the infected. From another, "... we failed to use the  proven tools possessed by the field of public health to fulfill what should be the first responsibility in an epidemic: the protection of the uninfected."[5]

HIV Testing

Public health policy in the United States explicitly encourages individuals who believe that they are at risk of HIV infection to be tested.  Implicitly, however, we discourage testing by making it burdensome to be tested and to do testing. The most pervasive burden is that most states impose a special informed consent requirement before a person can be tested.  This deviates from the general informed consent to medical treatment doctrine, which has been uniformly restricted to situations where patients suffer a physical injury which they were not warned about.[6] The courts have required informed consent for medical tests such as angiography that have substantial medical risks, and there is strong precedent for telling the patient the risks of not having a diagnostic test.[7] There was no requirement for specific informed consent to diagnostic tests that did not pose medical risks.

When HIV testing first became available, there was great fear that it would be used to identify and discriminate against infected persons.  As a result of intense lobbying by gay and civil liberties groups, joined by public health personnel for reasons that are discussed later in this chapter, many states passed laws requiring a special informed consent for HIV testing. Most states also require that the person receive counseling before the testing, and after receiving a positive test result. Even in states that did not have specific statutory requirements, fear of litigation caused hospitals to adopt guidelines mandating special consents for HIV testing. These requirements burden testing in two ways.

First, as discussed later, specific consent laws make it impossible to do screening for HIV.  Second, since there are no special consent requirements for other diagnostic tests that do not pose physiological risks,[8] the patient is implicitly told that this test is special, that it is not just a medical test. The consent forms often bias individuals against testing by stressing risks that are implicit in HIV infection, rather than in testing.  These include possible discrimination by employers and landlords, and the effect of HIV status on the availability of insurance. Until the advent of "triple-drug" treatment in late 1996 began to change perceptions about treatability of HIV, few consent forms mentioned any of the benefits of testing, such as prophylactic treatment of secondary infections and other precautions that can greatly reduce the morbidity of the disease and prolong life in some circumstances.

The most troubling aspect of special consent for HIV testing is that it presumes that it is proper to refuse testing.  While this may be the case when an asymptomatic person is considering testing, it wreaks havoc when a potentially infected person is seeking medical care.  HIV status is critical diagnostic information, certainly no less valuable than blood sugar or urinary protein. For HIV, however, federal and state laws prevent physicians from refusing to treat a patient because of the patient's HIV status. Physicians are often forced to treat individuals without being able to determine their HIV status, even if this status is fundamental to their choice of therapy.  This has been catastrophic in the case of pregnant women with HIV, for whom treatment dramatically reduces the chance of transmission to the fetus.[9]

Confidentiality

Keeping medical information confidentiality is a difficult problem.  People the world over, and through history, like to talk about their ailments. Unauthorized disclosures by health care providers are not the source of most unwanted disclosures of HIV status, the infected individuals are.[10]  The problem is that most of the health care in the United States is paid for by employers.  Most of the claims under these employer controlled health plans are reviewed, directly or indirectly, by the employers. To get one's care paid for, one must give up one's right to keep the information from one's employer.  The employer might then gossip about the information, or, worse, fire the employee.

As states adopted special rules for consent to HIV testing, they also imposed special restrictions on how health care providers must handle information about a patient's HIV status.  The goal was primarily to prevent employers and landlords from getting information about the patient's HIV status. These restrictions ranged from just restating the general duty to keep medical information confidential, to restrictions on transferring the information to persons who would otherwise have access to the patient's medical records. In the most extreme cases, physicians were prevented from putting the patient's HIV status in the medical records, or sharing it with other health care providers who needed the information to best care for patient.

Health care providers complained that it was impossible to maintain medical records such as hospital charts without mentioning information about a patient's HIV status.  The patients found that the restrictions made it harder to get medical care because their physicians' could not share information with other health care providers. The restrictions also made it difficult for their insurers to obtain the necessary information to pay health insurance claims.  As anti-discrimination in employment laws were strengthened, attacking the root cause for concern, the most Draconian of these restrictions on medical records were modified.[11] Confidentiality concerns have now shifted to whether there are situations, usually involving susceptibility to secondary infections such as tuberculosis, when the employee's HIV status poses a risk to others in the workplace.

The most contentious battle on confidentiality was whether the names of persons with a positive HIV test would be reported to the public health department, and, if the health department knew that a person was infected, whether it would investigate the case to determine source of the infection and to identify others at risk. HIV reporting and contact tracing were rejected by most states, and by all those with a significant number of HIV infected persons.  While, as discussed later, our public health system was already greatly weakened before AIDS was discovered, the decision to not report HIV was the pivotal break with traditional disease control.

Reporting and Contact Tracing Before AIDS

In 1981, at the time AIDS was identified, all states required physicians, hospitals, and laboratories to report the names of persons with serious communicable diseases, or diseases such as food poisoning which have particular public health significance.  These infected persons are then contacted as necessary to assure that they receive any necessary treatment, and to investigate the spread of the disease. Most disease investigations are simple and unintrusive, delving into where do you work, go to school, have you been to any parties, who do your children play with, or what did you eat yesterday. Cooperation was seldom an issue, and was never coerced.

Sexually transmitted disease (STD) investigations are much more intrusive. The infected person will be asked to identify their sexual contacts, by name and address if possible. These contacts will then be interviewed and warned that they are at risk for a sexually transmitted disease.  At no time is infected person originating the report named.  The contact is told no more than that he or she has been exposed to a STD and that the health department would like to help them get tested and any necessary treatment.  This can be a very confrontational situation, especially when the contact has been monogamous and thought that his or her partner has been as well. These investigations are carried out by skilled investigators, and the health departments have effective systems to protect the infected person's privacy.

Since few people want others to suffer needlessly from disease, there was general cooperation with these investigations.  People did not fear that the health department would divulge their confidences, and the health department clinics generally treated them with more respect than the private physician community.  (After the sexual revolution, it is hard to remember that all STDs once carried a profound stigma.) There were always some people who did not want to name their contacts, or withheld some of the names. They were not coerced to divulge their contacts because a few holdouts do not affect the overall disease control program.[12] Because of the communal nature of STDs, the contacts that patient A does not name will usually be named by patient B or C.[13] If the person is married, then the spouse's name is already known.

In the 1970s gay men in the cities with bath houses generally looked to the health department clinic for STD treatment, rather than private physicians.  There was no opposition to testing, reporting, and contact tracing for STDs.  Nearly every gay man frequenting a bathhouse participated in the epidemiological investigations of hepatitis B. It was our knowledge of the spread of hepatitis B in the bathhouses, and from there into the blood supply, that allowed us to characterize the epidemiology of HIV so quickly.  A higher percentage of infectious (primary) syphilis cases were gay men than heterosexuals, to the point that infection with syphilis was as good a predictor of homosexuality as was later infection with AIDS.

The First Aids Cases

The traditional reporting and investigation system was critical to identifying and characterizing AIDS.  When the first cases of unusual diseases among gay men were identified, no one realized their significance.  The CDC reported the first cases as a syndrome, i.e., a clinical entity, defined by its symptoms, for which no etiologic agent is known. Following standard procedure, the CDC solicited reports of other patients who suffered from the same symptoms. As more cases were reported, the clinical picture was refined and the initial case definition was modified.  As this continued, it became clear that the common element in the cases was suppression of the immune system, and that it was a disease of gay men.  At this point the case definition used to solicit reports of cases became the definition of AIDS.

During the initial years of the epidemic, when it was not known how the disease spread or who was at risk, there was no opposition to the reporting of AIDS. As more cases of AIDS were investigated, disease control investigators tried to discover its epidemiology.  It was soon obvious that this new disease had the same epidemiology as hepatitis B, and the rate of infection with both diseases was very high. Through compiling lists of persons with hepatitis B, the health departments had unwittingly compiled lists of the first men who would die of AIDS.  While it had been politically impossible, some public health physicians believed that we should have closed the bathhouses in the 1970s to prevent the hepatitis B epidemic.  Their worst fears were now realized: the bathhouses had become the vector for a far worse infection.

As the toll from AIDS increased, the government was pressed to make disability payments available to persons with AIDS. A person diagnosed with AIDS was entitled to various government benefits, most important of which was Supplemental Security Income (SSI) payments, a federal disability insurance program funded by the Social Security Administration. Most of these benefits were available only to persons who filed a claim disclosing that one had been diagnosed with AIDS.  This defused fears of reporting AIDS to health departments since there the government would get the information anyway.

The problem was persons who appeared to have AIDS, but who did not manifest the correct symptoms to come under the CDC definition.  These people were said to have AIDS-related complex (ARC).  While they were often sick and dying, they were invisible to epidemiologists because were not systematically reported to public health departments. We later learned that IDUs were dying of HIV-related illnesses during the initial phase of the epidemic, but that we did not notice these deaths.  The largest numbers of hidden cases were in Africa.  HIV was not noticed in IDUs or Africans because these were populations that already had high death rates from communicable diseases.[14]  IDUs and the Africans both died of the same diseases as before AIDS, they just died at a higher rate.  Since we took these deaths for granted, we did not take notice of the increase in the fatality rate of their routine infections. In contrast, the gay men tended to develop unusual infections and rare tumors, which brought their cases to the attention of the reporting physicians.

The Discovery of HIV

When the human immunodeficiency virus was isolated, and the HIV antibody test became available, AIDS should have ceased to exist. Once the etiologic agent is discovered, diseases are usually defined by that agent. AIDS should have been supplanted by HIV infection and HIV-related illness.  While we might have retained a clinical definition to indicate the stage of the disease, there was no longer any justification for distinctions such as AIDS and ARC.  At this point the politics of HIV overwhelmed the science.[15]

Gay and civil rights groups resisted shifting from reporting AIDS to reporting HIV.  Unlike AIDS patients, whose symptoms trigger government benefits, many persons with HIV are asymptomatic.  Since there are no benefits attached to a diagnosis of HIV infection without the symptoms that define AIDS, they reasoned that the government did not have any need for information about HIV infected persons.  In the states with the great majority of the AIDS cases, AIDS advocacy groups and civil liberties lobbies such as the American Civil Liberties Union (ACLU) organized against HIV reporting and contact tracing.

Colorado became a focal point of the national debate when Dr. Thomas Vernon, the state health director, asked the legislature to pass the nation's first HIV control law that was based on reporting, contact tracing, and measures to assure that physicians would properly treat HIV-infected individuals.[16]  While the proposed law provided the strongest protections ever proposed for public health information, it was vehemently opposed by all the national gay groups.  Despite heavy lobbying, the Colorado legislature passed the proposed bill with only minor changes.[17]  Most importantly, the law did not affect the health department's right to conduct other disease control activities.

Texas is an example of what happened in the states where the anti-reporting lobbies were more effective.  In the late 1970s and early 1980s, Texas had systematically rewritten its antiquated public health code.[18]  The revised Texas law allowed health officers to act decisively when necessary, while providing better review of public health orders and greater protections for individual liberties.  After a debacle involving the mishandling of an HIV-infected prostitute by a city health director who was not familiar with the revised disease control laws,[19] the legislature was lobbied to revise the disease control laws to protect the rights of HIV carriers.[20]

The Texas legislature added sweeping procedural safeguards to all the disease control laws, not just those governing HIV control. These included the right to appointed counsel, multiple court hearings, and the presumption that the disease carrier would remain at liberty during the proceedings. Under the old law, the health officer initiated restriction proceedings.  This was revised to require that the health officer's request be channeled through the city, county, or district attorney, adding a layer of political review.  Most difficultly, the disease carrier gets the right to a jury trial, with all the attendant delays and costs.[21]

Had these protections been restricted to HIV infected persons, they would have had little impact on disease control programs.  Irrespective of one's views about the advisability of using restrictions, including public health segregation, in the control of HIV, it has proven politically impossible in all but the most unusual circumstances.  This is not the case, however, for other communicable diseases, especially tuberculosis.  The practical effect of time consuming and expensive protections for disease carriers is to make it impossible for the health departments to carry out effective disease control programs.[22]  The impact on tuberculosis was seen a few years later when the rates of new infections began to increase.  This prompted many states to return to more traditional disease control laws for tuberculosis.

By 1988 the states had divided along lines defined by HIV reporting.  No state with a high rate of HIV-infection reports the names of HIV infected persons. While the CDC has continued to refine its antiquated case definition for AIDS, this does little to encourage HIV reporting and partner notification. Federal funding grants for HIV require states with mandatory HIV reporting to establish sites where persons could be tested without being reported. Despite evidence that HIV reporting and contact tracing is cost effective, there has been little reconsideration of these polices in the states that have the vast majority of HIV infected individuals.[23]

One of the great ironies of this failure to require reporting and investigation of HIV is that most states that do not require named reporting of HIV-infected persons have created exceptions to deal with public demands that people at risk be warned. California, for example, which has some of the strongest privacy laws on HIV-related information, allows physicians to notify spouses, sex-partners, and fellow IDUs of their patient's HIV status.[24]  Thus one of the most difficult and delicate public health duties, that of finding and notifying exposed persons while protecting the patient's confidentiality, is taken from the public department and left to physicians with no training or experience in disease control.

Screening

Since all states have specific consent requirements for HIV testing, it is impossible to do named screening for HIV.  This does not mean that screening is not done: there were hundreds of thousands of screening tests done each year in the United States. The screenings were done blind, and the infected persons that were detected were not informed of their disease. The most common blind screening was of newborns.  New York State, for example, screened all babies born in the state for HIV, but collected the data so that it could not identify the specific infected infants.  While this complied with the laws banning unconsented testing, it became controversial and was eventually stopped because it denied mothers and children the benefit of early diagnosis.[25]

There has been named screening of two subpopulations: military personnel and prisoners. The military, as a unit of the Federal government, with its own legal system, is not bound by state laws on civil matters such as HIV testing requirements. The screening of the military provided the largest population samples to study the incidence of HIV at various points in time.  Unfortunately this data is not of general applicability because the military has significantly different demographics from the general population, not the least because it excludes gay soldiers and IDUs. These differences are thought to give the military a lower incidence of HIV than the general population.

Prisons have a higher rate of HIV infection than the general population, ranging up to 17% of new inmates in prisons that are feed by cities with high rates of HIV infection.[26]  These rates reflect the high proportion of new inmates that have been convicted for crimes related to drug use.  Many were infected by sharing needles, but there are growing numbers of women who are infected in drugs-for-sex trades, or drug-related prostitution.

Several factors make HIV a very difficult problem in United States prisons.  First, the prison population in the United States is expanding much faster than the physical space necessary for housing the prisoners. This has led to severe overcrowding and the spread of communicable diseases such as tuberculosis.[27] Second, prisons must pay for medical care, including care for HIV infected prisoners, from the general prison budgets.  They cannot draw on health care funds provided for treatment of HIV-infected persons in the general population. Third, the legal standards for quality of prison life, medical care for prisoners, and even protection from violence are very low.

These factors combine to make most prisons in the United States frightening places.  Violence is the norm, drug use is common, and homosexual rape is used both for sexual gratification and to enforce power hierarchies among prisoners.[28] A recent study has documented substantial transmission of HIV in prisons by looking at inmates who had been behind bars since 1977 or earlier, eliminating all those that had been outside the prison walls during this time, or had any opportunity to acquire the infection other than from a fellow prisoner.  Of the 556 inmates that satisfied the study criteria, 87 had undergone identified HIV screening, and of these, 18 (21%) were HIV positive.[29]

This study illustrates the problem of HIV screening policies in prisons: do you do named screening and identify the infected prisoners? The state were the study was done, Florida, is one the states with a high incidence of HIV in its prisons.  As with the other states with high HIV incidence, Florida does not do named HIV screening.[30] The only prisoners whose HIV status were known were those that had previously asked to be tested for HIV, leaving a substantial number of cases undetected.

Those who oppose named screening see it as violating the prisoner's right to privacy, and potentially subjecting the prisoner to abuse by other prisoners and discrimination by the prison authorities.[31] Most courts have rejected this view,[32] and in other situations these same prison systems have cared little for their prisoners' privacy rights.[33] The failure to do named screening is probably best understood by looking at prison financial and medical resources.  When a prisoner is identified as infected with HIV, or suffering from HIV-related illness, that prisoner is entitled to medical care and some accommodation to his or her impaired immune status.  Named screening will only trigger more demands on already limited prison resources.  If the prisoner's HIV status is unknown, the prisoner will not receive prophylactic treatment for secondary infections, resulting in a shortened life-span.[34]

Epilog

The fragmented response to the HIV epidemic in the United States has two roots.  First is the historical allocation of the police power (the power to protect the public heath and safety) to the states.  Communicable diseases were inextricably intertwined with the colonization of the new world.  Their catastrophic effects on unexposed populations were as important as military technology in displacing the indigenous peoples.[35] Once the colonies were established, they were ravaged by epidemic diseases.[36]  The abatement of nuisance and the quarantine of disease carriers demanded prompt action. In a time of slow communications and limited governmental infrastructure, that meant that the police power had to be vested in the officials of the towns, not the colonial government, or the English Parliament.

When the Constitution was drafted in 1787, the central issue was balancing the power of the central government against that of the states.[37] The police power was among the powers left to the states. While the federal government has reclaimed the police power in many areas, especially environmental law, it has left public health to the states.[38]  As a result, there is no United States Health Department, no United States Public Health code, no United States Health Officer, and the Surgeon General has become a figurehead.[39]

The second root of this fragmented policy is that health departments since the 1960s have shifted their emphasis from communicable disease control to providing indigent health care. Health officers are no longer chosen for their expertise in disease control. Health departments have adopted the clinical physician's focus on individual care and rights. This is the antithesis of public health: society is the "patient" in public health, the rights of the individual are subsumed by the need to protect society.  By the mid 1970s, disease control had become such a low priority in the United States that we allowed hepatitis b to spread with little effort at control, setting the stage for the explosive spread of HIV.

The United States must reevaluate its policies on testing, screening, and confidentiality for communicable diseases.  While we cannot turn back the clock on HIV, we must prepare for the next emerging infectious disease. This will be most critical in states that crippled their general disease control efforts to in response to HIV. Scientists studying emerging viruses such as Hanta virus and Ebola virus are raising the alarm that we are no longer prepared to control a communicable disease epidemic.[40] The gravest threat maybe from the growing resistance of common bacterial illnesses to antibiotics.[41] We may soon come full circle, returning to a world in which public health and safety are dependent on disease control practices rather than medical technology.

 Notes