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A Unified Front Against AIDS?
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 bel.............
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