Acquired Immunodeficiency Syndrome

C

Defining AIDS

The CDC presented its first definition of AIDS in 1982. The CDC recommended that physicians diagnose AIDS if a person has an illness known to be caused by immune deficiency, as long as there is no known cause for this immune deficiency. (Radiation therapy for cancer and certain drugs also may impair the immune system). As more information became known about the course of HIV infection and the nature of the virus itself, this definition of AIDS was revised repeatedly to expand the list of illnesses considered diagnostic indicators of the disease. Early definitions were based on the opportunistic infections commonly found in HIV-infected men. As a result, many women who did not have symptoms covered in the official AIDS definition were denied disability benefits and AIDS-related drug therapies.

The current definition of AIDS was created in 1993 and includes 26 opportunistic infections and cancers, known as diagnostic indicators, which affect both men and women. The definition also emphasizes the importance of the level of CD4 cells in the blood. Today doctors make the diagnosis of AIDS in anyone with a CD4 count below 200 cells per microliter of blood, regardless of the associated illnesses they may have.

XI

Social Perspectives on AIDS

Although new and effective AIDS drugs have brought hope to many HIV-infected persons, a number of social and ethical dilemmas still confront researchers and public-health officials. The latest combination drug therapies are far too expensive for infected persons in the developing world—particularly in sub-Saharan Africa, where the majority of AIDS deaths have occurred. In these regions, where the incidence of HIV infection has soared, the lack of access to drugs can be catastrophic.

A

Testing AIDS Drugs and Vaccines

AIDS research in the developing world has raised ethical questions pertaining to the clinical testing of new therapies and potential vaccines. For example, controversy erupted over 1997 clinical trials that tested a shorter course of AZT therapy in HIV-infected pregnant women in developing countries. Earlier studies had shown that administering AZT to pregnant women for up to six months prior to birth could cut mother-to-child transmission of HIV by up to two-thirds. The treatment’s $800 cost, however, made it too expensive for patients in developing nations.

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The controversial 1997 clinical trials, which were conducted in Thailand and other regions in Asia and Africa, tested a shorter course of AZT treatment, costing only $50. Some pregnant women received AZT, while others received a placebo—a medically inactive substance often used in drug trials to help scientists determine the effectiveness of the drug under study. Ultimately the shorter course of AZT treatment proved to be successful and is now standard practice in a growing number of developing nations. However, at the time of the trials, critics charged that using a placebo on HIV-infected pregnant women—when AZT had already been shown to prevent mother-to-child transmission—was unethical and needlessly placed babies at fatal risk. Defenders of the studies countered that a placebo was necessary to accurately gauge the effectiveness of the AZT short-course treatment. Some critics speculated whether such a trial, while apparently acceptable in the developing nations of Asia and Africa, would ever have been viewed as ethical, or even permissible, in a developed nation like the United States.

Similar ethical questions surround the testing of AIDS vaccines in developing nations. Vaccines typically use weakened or killed HIV to spark antibody production. In some vaccines, these weakened or killed viruses have the potential to cause infection and disease. Critics have questioned whether it is ethical to place all the risk on test subjects in developing regions such as sub-Saharan Africa, where a person infected by a vaccine would have little or no access to medical care. At the same time, with AIDS causing up to 5,500 deaths a day in Africa, others feel that developing nations must pursue any medical avenue for stemming the epidemic and protecting people from the virus.

B

Economic Burden

For the struggling economies of some developing nations, AIDS has brought yet another burden: AIDS tends to kill young adults in the prime of their lives—the primary breadwinners and caregivers in families. According to figures released by the United Nations in 1999, AIDS has shortened the life expectancy in some African nations by an average of seven years. In Zimbabwe, life expectancy for adults declined from 61 years in 1993 to 38 in 2003, according to the World Health Organization (WHO). The next few decades may see average life expectance fall even lower in sub-Saharan Africa. Millions of children around the world have been orphaned by the AIDS epidemic. Those children who survive face poverty, a high risk of malnutrition and disease, and the absence of a family support structure.

In Africa, the disease has had a heavy impact on urban professionals—educated, skilled workers who play a critical role in the labor force of industries such as agriculture, education, transportation, and government. The decline in the skilled workforce has already damaged economic growth in Africa, and economists warn of disastrous consequences in the future.

C

Social Stigma and Discrimination

From the early days of the identification of AIDS, the disease has been powerfully linked to behaviors that are illegal (such as illicit drug use) or are considered immoral by many people (such as promiscuity and homosexuality). Consequently, a diagnosis of AIDS was a mark of disgrace, although medical research revealed that the disease follows well-defined modes of transmission that can affect any person. As the extent of the epidemic unfolded, misinformation about AIDS and how it is transmitted triggered widespread fear of contracting the disease. Some communities responded with hysteria that resulted in violence. In the United States, a Florida family with three HIV-positive sons who had become infected from blood transfusions were driven from their home when it was torched by an arsonist in 1987. In other communities, parents protested when HIV-infected children attended school. In many areas of the world, women in particular may face consequences if their HIV status is discovered. Reports indicate that many HIV-infected women are subject to domestic violence at the hands of their husbands—even if the husbands themselves are the source of infection. As a result, some women in developing nations fear being tested for HIV infection and cut themselves off from medical care and counseling.

In addition to social stigma, people infected with HIV must grapple with more immediate concerns—a daily struggle for basic medical care and other basic rights in the face of discrimination and fear because of their HIV status. In some places, nurses and other medical personnel who fear infection refuse to perform procedures on HIV-infected people. In 1998 the United States Supreme Court heard the case of Sidney Abbott, a young woman in Maine who sued dentist Randon Bragdon after he refused to treat her when he learned of her HIV-positive status. Basing its ruling on the Americans with Disabilities Act, the Supreme Court ruled in Bragdon v. Abbott that the woman’s HIV infection constituted a disability, even though she suffered from no disease symptoms. AIDS advocates expect this decision to protect the rights of many people with AIDS in the United States.

Some developing nations, such as Uganda, have met the AIDS crisis head-on, attempting to educate citizens and change high-risk behaviors in the population. However, other nations have been slow to even acknowledge the disease. In India, for example, the nation’s prime minister did not speak publicly about the dangers posed by the epidemic until 1999.

In developed nations, some of the stigma attached to a diagnosis of AIDS has lessened in recent years, in part due to the admissions by public figures and celebrities, especially in the United States, that they were HIV-infected. The deaths from AIDS of actor Rock Hudson and tennis player Arthur Ashe, and the AIDS advocacy roles of basketball player Magic Johnson and Olympic diver Greg Louganis have personalized the disease and helped society come to terms with the enormity of the epidemic.

To some scientists, the AIDS epidemic signals a troubling trend in humanity’s future. Along with other deadly microbial threats of recent years—most notably Ebola virus, which has caused sporadic epidemics in Africa, and hantavirus, which broke out in the American Southwest in the early 1990s—AIDS is viewed by some as yet another in a series of emerging diseases that demonstrate how vulnerable humans are to newly encountered microbes. With population and land development increasing, humans have encroached farther into rain forests and other formerly wild areas, unleashing previously unknown disease agents. Meanwhile, global travel has become faster, more convenient, and more accessible to many people. Some scientists are worried by these trends, fearing the potential for an as-yet-unknown pathogen to arise and spread quickly and lethally around the globe.

The social, ethical, and economic effects of the AIDS epidemic are still being played out, and no one is entirely certain what the consequences will be. Despite the many grim facts of the AIDS epidemic, however, humanity is armed with proven, effective weapons against the disease: knowledge, education, prevention, and the ever-growing store of information about the virus’s actions.