The current number of world-wide cases of HIV infection is estimated at 20 million. In the United States, 362,000 people have died because of AIDS or AIDS related illnesses, while over 581,000 are currently infected. These numbers are startling, but in the United States alone, a country often recognized as the supposed world-leader in health care, between 40,000 and 80,000 new cases of HIV infection are reported each year. This statistic moves beyond startling and into the realm of frightening. The consensus among most physicians, and indeed among most Americans is that AIDS rapidly approaches or has already attained the status of a health crisis. These same people often agree that not enough action is taken to resolve this crisis. Seemingly, a widely recognized crisis of this sort should receive its due attention from all aspects of society, including medicine, biological research, and the government. Unfortunately, AIDS remains an overwhelming crisis because it in fact does not receive its due attention.
The reasons behind the lack of attention brought to bear upon the AIDS health crisis involve a number of invariably linked problems in the response to AIDS when it was first discovered. Essentially, the response to AIDS was not unified, and therefore weakened. This early weakness has plagued the entirety of the struggle against the spread of HIV and AIDS since that time of initial discovery. The response to the AIDS crisis was disjointed because of an early lack of knowledge and interest in the disease; because of ethical and political problems concerning the research, diagnosis, and spread of the illness; and, most importantly, because of the flaws inherent in the structure of the public health care system. These difficult issues, present in the early struggle against the disease, have shaped and molded the character of the struggle that was to follow. Similar problems have manifested themselves throughout the history of the cause against AIDS, even in the present day.
The earliest research into AIDS and HIV suffered the same difficulties that any new field of research would—a lack of direction. Since so little was known about the disease and its causative factors, a wide variety of research endeavors were undertaken to explore the multitude of possibilities concerning the origin and progression of the illness. This lack of direction stems from the implications of the scientific process, which dictates that upon initial exploratory research, a hypothesis is formulated and then tested to determine its validity. This methodology is taught from the grade school level onward, to individuals participating in even the most rudimentary of science courses. It represents the backbone of modern science by installing a guideline for efficient and thorough research, experimentation, and documentation. In the case of a new field such as AIDS research in the late 1970’s and early 1980’s, a certain amount of misdirection and dead-end research is to be expected and even encouraged because of the many paths that this semi-random research reveals. The lack of initial research available makes direction in early AIDS research unfeasible and undesirable. How can science take direction without some initial knowledge to light the way? Without this knowledge, any direction imposed on the research would be misguided, and the situation would rapidly become a case of the blind leading the blind. The true problems in the response to the discovery of AIDS, however, occurred after research illuminated the nature of the disease, providing goals and direction toward which further research could strive.
Upon receiving the first reports of Kaposi’s sarcoma, an opportunistic infection common to immuno-suppressed individuals, in New York City, San Francisco, and Los Angeles, most physicians viewed the phenomenon as localized to the population of homosexual men. This perception served as an impediment for inciting interest in AIDS research. The homosexual community also received little attention from the media because of a lack of interest in a disease confined to a marginalized group. The minute proportion of media attention allotted to the early AIDS crisis produced a two-fold effect: it did little to encourage research on a disease in which no one seemed interested, and it also did not engender a great deal of public support for the cause against AIDS. In effect, the problem was cyclical. The public did not receive enough exposure to the disease to create an outcry over the lack of research, and researchers did not see enough interest in the disease to warrant involvement. Add to this the fact that the primary group of infected individuals were homosexual men—a group that carried enormous social stigmas even before their association with AIDS—and the problem of engendering research interest seems daunting, indeed.
The social stigmas revealed in the discussion concerning the lack of interest in research lead directly into a discussion of the role of ethics and social politics in the response to the early AIDS crisis. Once the agent of infection was determined to be a virus, and the virus was localized to certain high-risk groups, the effects of ethics and social pressures on the course of public response to the disease became clear. Most notably, the manner of AIDS transmission created a problem concerning potential violations of civil rights and personal privacy. This problem proved even more daunting before an accurate and reliable test for the presence of the HIV virus (or, as in current testing, for the viral antibodies) was developed and made widely available.
Before the advent of the HIV test, researchers understood the blood-borne nature of the virus. Its presence in the blood posed a serious threat to the nation’s blood supply. To screen against potentially infected blood in the early 1980’s, blood banks began to screen donors through interviews and questionnaires intended to eliminate potential high-risk donors from the pool of applicants. This screening presented a number of difficulties. The probe into the lives and behaviors of individuals attempting to donate blood seemed to violate a certain level of personal privacy, discouraging potential donors. It would prove difficult for a potential donor to admit to certain lifestyle choices and behaviors which were, if not legally, then at least socially punishable through discrimination and alienation. This difficulty in admission leads to a further, more grave problem: the unreliability of the information from the screenings. If the admission of certain behaviors is recognized as socially unacceptable, the propensity to falsify information greatly increases. Potentially contaminated blood would enter the blood pool, seemingly regardless of screening processes, without a conclusive test for HIV.
In some cases, this fear of contamination from high-risk groups took an extreme form. In January of 1983, a Texas-based group proposed legislation to criminalize homosexual behavior on the grounds that this behavior jeopardized public health. This group also pressured the White House to move to criminalize the donation of contaminated blood. Any donor who’s blood was found to be contaminated with the AIDS virus could be held legally responsible. While this legislation was suggested under the guise of the protection of public health, it seems that its result would have been highly counter-productive. Anyone who might volunteer to donate blood would be seriously dissuaded by the threat of potential legal action in the event that they, even unknowingly, carried the virus. Without any test to detect the presence of the virus, blood donation would present a no-win situation for the donor: he or she would undergo the inconvenient and uncomfortable process of donating blood, and then wait to find out if legal charges would be brought against him or her. Any humanitarian gain is lost in the threat of criminal repercussion. As an aside, it seems difficult to believe that without a test, the presence of the virus could be reliably detected to the point where the identification of an individual donor would be possible, yielding criminal prosecution. This further exposes the Texas group’s position as a proponent of the public good, and reveals their position as a merely a stance against certain behaviors they found unseemly.
Unfortunately, the problems concerning civil rights and privacy did not end with the development of a reliable HIV test. A positive HIV test often carries with it social prejudices concerning the means of contraction of the virus. Issues of fault and blame pervade a positive diagnosis, making the dissemination of knowledge concerning infected individuals a controversial subject. While knowledge and record of infected individuals is necessary for the study and research of the disease, this notion is countered by the myriad social problems an HIV-positive individual may encounter in the future by virtue of being identified as infected.
The greatest impediment to a unified response to the AIDS crisis involved the response of the institutionalized public health system. The two most important groups involved were the Centers for Disease Control (herein CDC) and the National Institutes of Health (herein NIH). The public health system, at its very heart, exists as an uncoordinated entity, structurally unable to present a unified response to any health crisis, let alone one with the complexity of AIDS.
In a health emergency, distinct roles must be defined in order to conserve time and resources. Along with a rapid response, the public health system should avoid duplicating research, and should employ the knowledge available in both the public and private spheres of research. These necessities in a health crisis require coordination. This level of coordination seems impossible under the current system for three integral reasons: assigning roles is contrary to the American scientific spirit, the identification of a crisis proceeds at a slow and haphazard pace, and, most importantly, a lack of central authority prevents the flexibility and fluidity necessary to maintain coordination throughout the shifting environments that an expanding health crisis creates.
As discussed above, a certain chaos exists inherently in the scientific process, especially when little initial information is available to direct research. Even when information becomes available, however, scientists are often unwilling to accept assigned research tasks. Scientific freedom serves as a major attraction in becoming a scientist—individual interest dictates research. Under the structure of the current system, if a scientist did, for some reason, want to abandon a project already in progress for one more integral to the cause, the transition of funding and laboratory configuration becomes enormously difficult logistically. New funding, usually in the form of grants, must be approved, and new facilities must be configured to support the new research objective. This clearly points to a lack of a central coordinating authority, which would ease the transition. Even with the facilitation of research objective transition, the decision to change remains in the hands of the individual researcher. The debate may come to an impasse at the point where the struggle balances between personal scientific freedom and the public good.
The lack of central authority greatly slows the process of crisis identification. The collection of disease data operates primarily on an anecdotal system. Only individual states can make a disease “reportable.” In other words, the state must request that physicians, laboratories, and hospitals in that state report every case of a certain disease they come across to state officials, in order to facilitate its tracking and future research. The CDC, NIH or any other federal body cannot demand any data, or even the collection of data. At most, the federal institutions can merely request the report of data. These requests, even though they originate from a federal body, are rather toothless. If requests are not honored by the states or private institutions, the CDC and NIH have no sanctioning power, no punitive recourse against the private sector. One inherent problem that results is that fifty states have fifty reporting procedures, further complicating and slowing the collection of information. Another involves the fact that a private health care organization rarely knows the prevalence of the disease unless it is given broader statistics from a more central source which has compiled them. Circuitously, it is these private institutions that initially notify the state that a disease is worth reporting. Not only does this circular and anecdotal method of reporting slow the process of potential crisis recognition, but so too does the weak relationship between the states and the federal government slow the collection of data by the supposedly most central authority—the federal government.
The question of the current relevance of these problems now arises. Have changes been made since the advent of the AIDS crisis? The answer seems to be a hesitant “yes.” The hesitancy stems from the fact that although the inadequacy of the national response to AIDS is widely recognized, few concrete changes have taken effect to resolve the inadequacy. On July 2, 1992, the Human Resources and Intergovernmental Relations Subcommittee of the Committee on Government Operations in the House of Representatives heard testimony concerning the politics of AIDS prevention at the CDC. The issues that were addressed included the allocation of resources between prevention research and cure research, and the need for an increase of allocation to the former. The hearing includes a discussion of the difficulties within the federal government, specifically within the CDC, in assessing the most efficient use of funds. The lack of coordination amongst public and private research serves as one of the main obstacles—again, a lack of coordination.
In a NIH AIDS Research Program Evaluation concluded in 1997, the Working Group, responsible for this study, reported a need for the better integration and coordination of private and public researchers. The report also calls for a rededication to basic research initiatives, and with them a redistribution of funds. Research to prevent HIV transmission is also stressed. It quickly becomes clear that there are similarities between problems within the CDC and the NIH themselves, let alone the problems in communication and cooperation between the two institutions.
The original problems in presenting a united front against AIDS when it first appeared still haunt the health care community. Education can change prejudices and social stigmas that interfere with the prevention of HIV transmission, but the coordination necessary for this education must come from a strong, centralized public health organization, in order to ensure maximum efficiency and expediency in addressing the complex and varying issues in a health care crisis such as AIDS. Unfortunately, no such organization exists. This does not bode well for the future, where the possibility of a new health crisis is ever-present, while the health care system remains unprepared.
A Unified Front Against AIDS?
Feldman, Douglas A.. Global AIDS Policy. Westport, CT: Bergin & Garvey, 1994.
House of Representatives. Hearing Before the Human Resources and Intergovernmental Relations Subcommittee of the Committee on Government Operations, The Politics of AIDS Prevention at the Centers for Disease Control. Washington: U. S. Printing Office, 1993.
Murphy, Timothy F.. Ethics in an Epidemic. Los Angeles: U. of California Press, 1994.
Panem, Sandra. The AIDS Bureaucracy. Cambridge, MA: Harvard UP, 1988.
Philipson, Tomas J. and Posner, Richard A.. Private Choices and Public Health. Cambridge, MA: Harvard UP, 1993.
“Report of the NIH AIDS Research Program Evaluation Working Group.” NIH AIDS Research Program Evaluation Working Group Report. 1997. .