Lawrence O. Gostin,
excerpted from: Lawrence O. Gostin, Scott Burris, Zita Lazzarini, the Law and the Public's Health: a Study of Infectious Disease Law in The United States, 99 Columbia Law Review 59-118, 89-101 (January, 1999) (271 Footnotes)
We complete our presentation of the essential context of communicable disease law reform by characterizing the major challenges to effective disease control. We offer a taxonomy of the political disputes that are built into the practice and goals of public health. We then discuss three recent developments that profoundly affect the performance of health authorities in the control of communicable disease. The first development is the continuing decay of the public health infrastructure for disease control, a network that encompasses professional and technical personnel, public health laboratories, surveillance and other information systems, training programs, and clinical facilities. This infrastructure has been so sorely neglected as to impair the public health system's ability to carry out its core functions. The second development is the emergence and reemergence of communicable diseases that are taxing the public health system. The third development is the private sector reform of the health care system, particularly the advent of managed care.
A. The Structural Challenges
1. The Problem of Apathy.--Good public health requires both personal and social change, as well as investment of social resources in creating the conditions in which people can be healthy. Policymakers and the public must care enough about public health as a societal goal to support programs and, on the individual level, to overcome the resistance to change in their own lives. While Americans are, as a group, quite as ready as public health officials to worry about threats to health, public health officials and the public rarely worry about the same ones in the same way.
Individuals tend to be concerned about their personal health, and modern medicine obliges with an emphasis on identifying patients' "risk factors" for illness. Doctors and the news media have made us aware of a staggering number of behaviors and attributes--from consuming saccharin to high cholesterol levels--that raise our individual risk of illness above that of the average person in the population. If a person is at risk of a heart attack because of high blood pressure, then he may be more likely both to change his behavior and to see heart disease and hypertension as major health priorities. The converse is also true: those at average risk often do not worry about a heart attack as a major health threat and do not make changes in their behavior to avoid it. From the population's perspective on public health, however, relative risk is not always a very helpful statistic. Even people with a high relative risk of a particular condition normally have a low absolute risk, and for most conditions the greatest death toll comes from those who have no apparent "risk factors" at all.
A high-fat diet is a good example. A high-fat diet is related to heart disease, but the relative risk is modest. However, because heart disease is the most common cause of death in the United States and because a high-fat diet is virtually universal, the excess disease burden in the population attributable to this risk factor is high. Health officials would like people with high blood pressure to remember to buckle their seat belts. They would like people with normal blood pressure to eat sensibly and exercise. They would like people to join in efforts to reduce the very small, nonspecific risks that produce the most illnesses and deaths in the population.
Timing and social fault lines also contribute to the apathy problem. People tend to worry more about immediate threats than about things that might or might not happen in the more distant future. They will ordinarily trade health tomorrow for satisfaction today, particularly when the people most at risk are strangers. Thus, while tuberculosis and STDs continued to occur at a high rate among poor urban residents in the 1970s and 1980s, health budgets allotted scant funds for control programs. Political and public support for effective programs revived only when the epidemics seemed poised to endanger the "general population." Even when unmistakably threatened, societies often pass through a period of what can only be called denial. We have seen this pattern repeated as HIV/AIDS has marched across the globe.
All agencies devoted to improving the public's health face the challenge of explaining why disease prevention and health promotion are important and deserving of policymakers' and the public's support. Health departments must make such political leadership a priority. The IOM Report stresses the need for public health agencies to find ways to build political support and fight apathy.
2. The Jurisdiction Problem.--Almost everything the government does--and almost by definition everything that people do--affects public health. Protection of the public's health could easily be defined to include communicable disease control, food and water quality protection, environmental and occupational risk reduction (e.g., air pollution, lead paint, workplace exposures), highway safety, and modification of chronic disease risks linked to behavior (e.g., diet, exercise, tobacco and alcohol consumption). Nonetheless, even the most powerful and best-led public health agency could not exercise direct authority over the full range of these activities. In practice, a public health department possesses two kinds of jurisdiction: its actual jurisdiction, where it has the power to regulate directly, and its "persuasive" jurisdiction, where its power stems from coalitions with other agencies, relationships with policymakers, and public support. Thus every health agency faces the challenge of using its expertise and persuasive power to encourage and facilitate others to take actions that are consistent with the goals of public health.
The jurisdiction problem, much like the apathy problem, casts the health agency in the roles of educator and persuader. It also requires the health department to act as an expert for other agencies and to coordinate the activities of government agencies affecting human health. More specifically, the modern health department must learn how to educate, motivate, and collaborate with agencies that have little or no institutional knowledge of or even interest in public health.
3. The Problem of Stigma and Social Hostility.--Throughout the modern history of disease control, the stigma associated with serious diseases and the social hostility that is often directed at those with, or at risk of, disease have interfered with the effective operation of public health programs. As part of any effort to control communicable diseases, health agencies must find ways to address both the reality and the perception of social risk associated with these diseases.
Social hostility and stigma are related, but different in ways that are important to public health law. Stigma has been understood as a social relation between a stigmatized and a "normal" person, based on a shared belief that some part of the stigmatized person's identity is, as Erving Goffman put it, "spoiled." A person who feels stigmatized shares others' negative view of his condition to some degree. Illness itself can be stigmatizing for persons who are already ill or are perceived to be at risk of a disease. Specific attributes of a disease, such as fatality and association with already disfavored groups, promote stigma. An individual's behavior, appearance, and personal history, such as a criminal record, that deviate from the accepted social norm can also foster stigma. Consequently, many people with, or at risk of, disease because of their behavior carry additional stigmas apart from the disease. Stigma has far-reaching consequences for the life of a person who is stigmatized, one of which is often the development of complex strategies of concealment. Concealment of disease is antithetical to public health programs that require the infected and others at risk to identify themselves. Concealment of behavior that puts an individual at risk of disease interferes with health education and prevention programs by deterring individuals from identifying their own behavior as risky or modifying their behavior to make it safer.
The concept of social hostility is also important to the social construction of disease. Social hostility involves negative social attitudes towards certain individuals, but without the individual feeling any shame about his identity or condition. Like stigma, the perception of social hostility can discourage participation in public health programs. Even a person who feels no shame in suffering from an infectious disease, such as tuberculosis or herpes simplex, can fear the consequences of social hostility--for example, termination from employment or loss of intimate relationships. Social hostility can also undermine the conditions necessary for human health. The pervasive social hostility towards gay men, for example, contributes to the creation of a gay subculture built around nonmonogamous sexual relationships. With a few exceptions in particular times and places, gay men have been denied recognition of, and validation for, their long-term relationships. Most obviously, the law has explicitly forbidden gay sexual unions, through sodomy laws and prohibitions on same-sex marriage. Through the social force of stigma, homosexuality was constructed as shameful, but shame was coupled with overt oppression to ensure that gay sexual behavior was secret and furtive. Since the late 1960s, gay men and lesbians have organized to reject stigma, but the decline of social hostility has been slower, as the continuing debate over gay marriage and domestic partnership illustrates.
4. The Problem of Legitimacy.--Even where there is agreement about what should be done to promote public health, there may be deep disagreement about the government's role in setting a moral agenda. The legitimacy problem manifests itself in at least three common forms, two of which--the paternalism and endorsement objections--we have already described. The third common variant is the general idea that government ought to be neutral on questions of values. Lessig points to Justice Jackson's famous peroration in West Virginia State Board of Education v. Barnette, culminating in the declaration that, "'[i]f there is any fixed star in our constitutional constellation, it is that no official, high or petty, can prescribe what shall be orthodox in politics, nationalism, religion, or other matters of opinion or force citizens to confess by word or act their faith therein."' As Lessig points out--and public health practice demonstrates--this statement is as false as it is eloquent. All health agencies must regulate social meaning to promote health. They must make smoking seem undesirable instead of glamorous; they must make people embarrassed not to pick a designated driver before drinking. To do so effectively, however, public health authorities must find ways of meeting objections concerning legitimacy.
5. The Problem of Trust.--Health departments depend on public confidence in the expertise and judgment of health officials for fiscal and political support. This poses a subtle but crucial challenge to public health officials, which is well-summarized in the IOM Report.
Public health professionals rely on expert knowledge derived from such areas as epidemiology and biostatistics to identify and deal with the health needs of whole populations. . . . Thus their aim is to maximize the influence of accurate data and professional judgment on decision-making--to make decisions as comprehensive and objective as possible. Health officials know that this expertise gives them the authority and the ability to convince. Yet, expertise is often uninspiring to the public and ignored in the political process. The IOM Report argued (and we agree) that health officials must be willing to embrace and excel in the political process, but precisely that political involvement risks weakening the impression of professional neutrality and expertise from which public health officials draw much of their political power. This is to some extent a Gordian knot that, like the original, can only be untied by inspired action.
The problem of trust has obvious links to both legitimacy and apathy. It is also tied to the problem of stigma. Despite the coercive powers vested in health agencies, most successful health interventions depend on the voluntary compliance of their targets. Whether the desired end is fewer incidents of drunk driving, more HIV testing, or the separation of smokers and nonsmokers, there are not enough policemen to enforce every law or recommendation designed to protect the public health. "Compliance without enforcement" is essential to public health. One of the most important determinants of voluntary compliance is the credibility of the health department. This is true with respect to the medical validity of its advice, the rationality and fairness of its procedures, and its ability to assure protection from discrimination, ostracism, and other forms of mistreatment for those who comply with its advice.
The credibility of health departments is also tied to the existence of social hostility towards populations at risk and the health department's ability to distance itself from social forces or other government agencies that are perceived to be hostile. Where health departments fail to do so or where they earn mistrust on their own, the effects on health care access and public health compliance can be dramatic. Suspicion of government intentions was a major factor in gay men's individual and organized resistance to HIV testing. Similarly, the Tuskegee Syphilis Study, in which black patients were deliberately denied treatment to allow study of the long-term effects of the disease, is cited as a reason that many African Americans mistrust health authorities. Winning and maintaining the trust of those with, or at risk of, communicable disease is a precondition for effective programs, which helps explain the importance of solving the problems of stigma and social hostility.
B. Decay of the Public Health Infrastructure
In 1988, the IOM described the current public health system as "inadequate" to protect the public health through "effective, organized and sustained efforts." The IOM concluded that the United States has "let down [[its] public health guard as a nation, and [that] the health of the public is unnecessarily threatened as a result." Since 1988, little has been done to address these concerns.
Funding for essential public health functions has been in chronic decline. Overall, the proportion of national health expenditures allocated to population-based public health initiatives is approximately one percent. Federal and state budget reductions have so depleted public health resources that many public health departments fail to fulfill their core functions. Hiring freezes prevent public health agencies from filling staff vacancies, overburdened public health departments lack the capacity to investigate all reported cases of disease, and poorly equipped public health agencies are unable to track new diseases. Furthermore, public health resources are being strained by increasing demands to provide indigent care. Data suggest that lack of access to regular medical services increases populations' vulnerability to reemerging diseases, including tuberculosis and measles, as well as new ones.
Surveillance offers a striking example of the failure to adequately support the most basic public health functions. State and local support for communicable disease surveillance has declined during the last decade with potentially alarming results. The Council of State and Territorial Epidemiologists has concluded that
Our ability to detect and monitor infectious disease threats to health is in jeopardy. False perceptions that such threats had dwindled or disappeared led to complacency and decreased vigilance regarding infectious diseases, resulting in a weakening of surveillance--the foundation for control of infectious diseases. Research has revealed that in 1992, less than $75 million (from all sources) was spent on surveillance of eighty or so infectious diseases. Of that, less than $17 million (23%) was spent on diseases other than HIV/AIDS, tuberculosis, or STDs. Moreover, in many states, very few professionals are engaged in this activity; in twenty-four states, there are fewer than the equivalent of six full-time professionals per million in the population. In twelve states surveyed, no personnel have been dedicated to food-borne disease surveillance, despite increasing outbreaks of food-borne disease.
The decay of the disease control infrastructure is a striking instance of the apathy problem in public health. Not all public health goals and activities have garnered the same understanding, appreciation, and support as medical services have. Thus, this uneven public support has been insufficient to sustain a solid public health infrastructure; indeed, it sometimes seems as if the population is simply unaware of the need for a stable public health system.
C. Changes in Communicable Disease Threats
It may be that public perception of a public health crisis is necessary to rally society to reinvest in the public health infrastructure. If so, nature may be cooperating with a vengeance. Throughout most of the twentieth century, medicine and public health appeared to be winning the battle against communicable diseases. Greater understanding of disease processes and rapid development of antibiotics and vaccines dramatically decreased the impact of communicable diseases in developed countries. In the 1980s, however, the emergence of HIV/AIDS, the reemergence of tuberculosis, and the identification of numerous other deadly communicable diseases in the United States and abroad served as a sobering reminder that communicable diseases continue to threaten the health of people worldwide. In the United States, public health agencies have reported a resurgence of ancient and new viruses, bacteria, and protozoans--ranging from HIV and hantavirus to streptococcus pneumoniae, E. coli bacteria, and Cryptosporidium. In the United States alone, infectious agents--apart from those that cause HIV and STDs--account for approximately ninety thousand deaths annually; they also exact a great toll on society by causing an estimated 740 million nonfatal illnesses each year. Globally, diseases that were once under control, such as cholera, dengue, and yellow fever, are now pervasive. In addition, new and virulent infectious diseases are emerging, such as Legionnaires' disease, Lyme disease, AIDS, and multidrug-resistant tuberculosis. In 1995, Zaire experienced an outbreak of Ebola, a relatively new disease in humans, but one of the most pernicious ever reported. Infectious diseases remain the leading cause of death worldwide, and are, in the aggregate, the third leading cause of death in the United States.
The "return" of communicable disease challenges public health on all levels of its work. Prevention and control of both established and emerging microbial threats require health agencies to deploy traditional tools of surveillance, vaccination, isolation, quarantine, and treatment, often on an international scale. Unfortunately, the decay of and disinvestment in the public health infrastructure has resulted in a public health system in the United States and elsewhere that is ill-prepared to meet such demands. Moreover, health measures aimed solely at microbes ignore the behavioral and ecological factors that potentiate disease threats. Population growth, urban migration, and overcrowding in the congregate settings of prisons, homeless shelters, mental institutions, nursing homes, and child care centers facilitate person-to -person transmission of disease. International travel, migration, refugee movement, and commercial transport of goods and animals allow diseases to move across state, national, and regional boundaries. War, poverty, malnutrition, homelessness, poor sanitation, an aging population, and the global spread of HIV infection and tuberculosis result in increased immunosuppression and susceptibility to disease. Risk behaviors, such as unprotected sex and sharing of drug injection equipment, efficiently transmit certain diseases. In addition, changes in the ecosystem (e.g., deforestation, flood, drought, and climatic warming) alter natural environments and increase human exposure to insect vectors and animal reservoirs. Technical innovations, such as large-scale food processing or introduction of urban water systems, help distribute microbes rapidly and extensively. Finally, widespread use of broad spectrum antimicrobial medication cultivates new forms of drug-resistant organisms.
Factors like these raise the jurisdiction problem. Even the best-run public health agency cannot influence all of the circumstances leading to infectious diseases in the population. Due to the complex and connected causes of disease emergence and reemergence, narrowly focused approaches to controlling new communicable disease threats (e.g., targeting specific microbials or particular individuals) are likely to fail. Although medical or other interventions aimed at only one of these factors may effectively prevent or cure individual cases of disease, prevention of large-scale threats requires multifaceted interventions. Health agencies must take a leading role in demonstrating and explaining the links between disease and social conditions and practices, and must show how public and private action can make a difference.
D. The Changing Health Care Environment
The health care environment is undergoing rapid change. Despite the failure of national health care reform, a major restructuring of health care delivery is underway, driven by efforts to contain costs, devolution of authority to the states, and, to a lesser degree, concerns about access to care. It is unclear whether these changes will relieve or increase burdens on the public health system. The outcome may depend upon the emphasis that states, employers, and third-party payers place on delivery of preventive services and on coordination with traditional public health activities.
The question for public health is whether the goals of health care system restructuring are sufficiently congruent with those of public health. Some commentators question whether ample incentives or standards exist to encourage employers and managed care plans to invest in disease prevention and whether managed care can, or will, be required to cover preventive services. Many of the cost-savings from long-term disease prevention and health promotion efforts, such as diet counseling, smoking cessation, and HIV/AIDS education, are realized only years later. If employers change plans frequently--seeking the lowest cost per enrollee--little incentive exists for managed care plans to offer effective, high-quality, and perhaps more costly preventive services since the plans are unlikely to reap the eventual savings from successful preventive measures.
Existing law does not effectively coordinate or monitor the public health services delivered by private providers or managed care plans. A substantial danger exists that both policymakers and the public will assume that managed care organizations are providing a full range of preventive services. This assumption could decrease public support for government-sponsored preventive efforts or a reduction in resources for population-based programs that are unlikely to be covered by managed care (e.g., lead paint abatement, substance abuse treatment programs, communicable disease surveillance, and individualized control and treatment efforts). Because there are disincentives to provide preventive care, private medical practitioners, hospitals, and managed care organizations will be able to maintain and improve the health of the population only where government public health agencies remain strong partners. Government partnership is also necessary, because, "[w]hen health emergencies strike a community, the citizens will pressure the local governmental health officials, not the administrators or medical leadership of the managed care organizations, community care networks, or hospitals, for action on behalf of the community as a whole." Ultimately, government cannot and should not seek to avoid responsibility for protecting public health.