Acquired Immunodeficiency Syndrome

C

Support Mechanisms

A person diagnosed with HIV infection faces many challenges, including choosing the best course of treatment, paying for health care, and providing for the needs of children in the family while ill. In addition to these practical considerations, people with HIV infection must cope with the emotional toll associated with the diagnosis of a potentially fatal illness. The social stigma that continues to surround a diagnosis of AIDS because of the disease’s prevalence among gay men or drug users causes many people to avoid telling family or friends about their illness. People with AIDS often feel incredibly lonely as they try to cope with a devastating illness on their own. Loneliness, anxiety, fear, anger, and other emotions often require as much attention as the medical illnesses common to HIV infection.

Since the AIDS epidemic began in the United States in 1981, grassroots organizations have been created to meet the medical and emotional needs of people who have AIDS and also to protect their civil rights. The Gay Men’s Health Crisis, founded in 1982, was the first nonprofit organization to provide medical, education, and advocacy services for people with AIDS. The Los Angeles Shanti Group was established in 1983 to provide emotional support and medical guidance to people with AIDS and other life-threatening illnesses. Activist organizations such as the AIDS Coalition to Unleash Power (ACT UP), founded in 1986, have been created to initiate faster change in public policies and to speed up the course of AIDS clinical research. American Foundation for AIDS Research (AMFAR), created in 1985, is the nation’s leading nonprofit organization dedicated to the support of AIDS research and the advocacy of fair and compassionate AIDS-related public policies. In Canada, the AIDS Committee of Toronto (ACT) was established in 1983 by community activists intent on fighting for the civil rights of people infected with HIV. As the AIDS epidemic grew, ACT expanded its mission to help people disabled by the disease and to spread health information to halt the spread of the disease. AIDS Vancouver (AV), also established in 1983, became the principal education, prevention, and support service organization for that city.

Counseling centers and churches provide individual or group counseling to help people with HIV infection or AIDS share their feelings, problems, and coping mechanisms with others. Family counseling can address the emotions of other family members who are disturbed by the diagnosis of HIV infection in another family member. Grief counseling also helps people who have lost friends or family members to AIDS.

In the United States and Canada, government-funded and privately funded organizations help people cope with disease. For instance, local, city-funded clinics provide AIDS testing as well as counseling to prepare people for a test result that indicates HIV infection. Health experts at clinics explain the medical progression of the illness, arrange medical appointments with health-care specialists, and help people choose appropriate treatment options. State-appointed social workers and community nonprofit organizations help people find federally funded programs that offset the high cost of medical care and child care.

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The United States Congress has passed legislation to help HIV-infected individuals. In 1990 the Americans with Disabilities Act (ADA) was enacted, protecting people with disabling diseases, including AIDS, from discrimination in activities such as applying for jobs or buying a house. The Ryan White Comprehensive AIDS Resources Emergency Act was established in 1990 and reauthorized in 1996. This program provides medical and dental care, counseling, transportation, and home and hospice care for low-income or uninsured people living with AIDS. The AIDS Drug Assistance Program (ADAP) is funded in large part by this act and administered by all 50 states. It pays for costly AIDS medications for people who do not have private insurance and who are not poor enough to be eligible for Medicaid.

IX

Prevention of AIDS

With a vaccine for AIDS years away and no cure on the horizon, experts believe that the most effective treatment for AIDS is to prevent HIV infection. Health officials focus public education programs on altering risky behaviors linked to HIV transmission, particularly unsafe sexual practices and needle-sharing by intravenous drug users. Safe-sex campaigns sponsored by health clinics, social centers, schools, and churches encourage sexual abstinence or monogamy (sexual relations with only one partner). Education programs instruct about the proper way to use condoms to provide a protective barrier against transmission of HIV during sexual intercourse. Needle-exchange programs, which provide clean needles to drug users, enable intravenous drug abusers to avoid sharing HIV-contaminated needles. Needle-exchange programs have been widely criticized because they seem to condone illicit drug use. However, numerous U.S. government-funded studies have indicated that such programs reduce HIV transmission without promoting greater drug use. To reduce the accidental transmission of HIV during medical procedures, both the United States and Canada have established strict guidelines for health-care settings, including the use of protective clothing and proper instrument disposal.

In the United States, the effectiveness of public education programs that target people at risk for HIV infection was well demonstrated in the gay community of San Francisco, California, in the 1980s. In 1982 and 1983, 6,000 to 8,000 people in San Francisco became infected with HIV. The gay community rallied to promote condom use and advocate monogamy through extensive education programs and public health advertisements geared for gay men. These public education programs were credited with reducing the number of gay men in San Francisco who became HIV infected. By 1993 the number of new infections declined to 1,000, and by 1999, fewer than 500 people were infected each year.

Public education about AIDS has also proven effective in other countries. Uganda was one of the first African countries to report cases of HIV infection. The first cases of AIDS were reported there in 1982, and by the late 1980s Uganda had one of the highest rates of HIV infection in the world. The Ugandan government was one of the first countries to set up a partnership with WHO to create a national AIDS control program called the AIDS Information Centre (AIC). The AIC has established extensive education programs promoting condom use and other methods to prevent HIV from spreading further. The program has also worked with community organizations to change social behaviors that increase the risk of HIV infection. The AIC promotes its message using innovative drama, song, and dance programs, a particularly effective communication method for African communities. AIC established confidential HIV testing services that provide same-day results and community counseling programs. As a result of Uganda’s quick response to the AIDS epidemic, the number of HIV infected people in that country declined significantly after 1993, during a time when most other African nations faced a frightening increase in the incidence of HIV infection.

Public health officials have learned that education programs that teach and reinforce safe behaviors through a series of meetings are more effective than one-time exposure to public-health information provided in a class lecture, magazine article, advertisement, or pamphlet. Education programs tailored to reflect specific ethnic and cultural preferences prove even more effective. For example, the Canadian Aboriginal AIDS Network creates HIV education programs that fight the common misperception among the indigenous peoples of Canada that AIDS is primarily a disease of white, affluent people. Among indigenous communities, the network promotes programs that use colloquial language to increase awareness about safe sex practices and needle use.

Another recently proposed approach to AIDS prevention is development of simple microbicidal creams or gels that women could use before sex to reduce the risk of HIV infection. Such topical anti-HIV products would be especially useful in developing countries where women may not have access to other forms of protection such as condoms. Currently, a number of different products are undergoing clinical trials in Africa.

Research conducted in Africa demonstrated that male circumcision could reduce by more than half a man’s risk of contracting AIDS through heterosexual intercourse. The findings were announced by the U.S. National Institutes of Health in 2006. They were not expected to affect AIDS prevention strategies in the United States, where most men are circumcised. However, adult circumcision could be a prevention strategy in developing countries where circumcision is less common. Male circumcision also lowers the risk of transmitting AIDS to women, but its effect on AIDS risk for men who have sex with men is not yet known.

X

History of AIDS

In the short time since the first cases of the AIDS epidemic were reported in 1981, scientists have identified the viral cause of the illness, the basic modes of transmission, accurate tests for the presence of infection, and effective drugs that slow or halt the progression of the disease. During that same period, governments and grassroots organizations around the world were spurred into action to meet the growing need for AIDS education, counseling, patients’ rights, and clinical research. Despite these advances, critics observe that many governments were slow to respond to the crisis. For example, United States president Ronald Reagan did not discuss AIDS in public until 1987, more than six years after the start of the AIDS epidemic. By that time, 41,000 Americans had already died from the disease. AIDS advocates believe that the lack of federal support for AIDS research in these early years delayed the development of an effective vaccine or a cure for the disease.

A

Origin of the AIDS Virus

Using computer technology to study the structure of HIV, scientists have determined that HIV originated around 1930 in rural areas of Central Africa, where the virus may have been present for many years in isolated communities. The virus probably did not spread because members of these rural communities had limited contact with people from other areas. But in the 1960s and 1970s, political upheaval, wars, drought, and famine forced many people from these rural areas to migrate to cities to find jobs. During this time, the incidence of sexually transmitted infections, including HIV infection, accelerated and quickly spread throughout Africa. As world travel became more prevalent, HIV infection developed into a worldwide epidemic. Studies of stored blood from the United States suggest that HIV infection was well established there by 1978.

In 1970, at about the same time that the HIV epidemic was taking hold in Africa, American molecular biologist David Baltimore and American virologist Howard Temin independently discovered the enzyme reverse transcriptase, which could be used to identify retroviruses. Over the next ten years, many retroviruses were identified in animals. But not until 1980, shortly before the first AIDS cases were recognized in the United States, did American virologist Robert Gallo identify the first human retroviruses, HTLV-I and HTLV-II (HTLV stands for human T cell lymphotropic virus).

Other studies demonstrated that these human retroviruses were more closely related to a retrovirus found in African chimpanzees than to each other. This discovery suggests that the human retroviruses may have evolved from retroviruses that originally infected chimpanzees. The chimpanzee retrovirus likely infected people and underwent mutations to form the human retrovirus. In 1999 scientists confirmed that HIV spread from chimpanzees to humans on at least three separate occasions in Central Africa, probably beginning in the 1940s or 1950s.

B

AIDS Identified

Beginning in June 1981 the CDC published reports on clusters of gay men in New York and California who had been diagnosed with pneumocystic pneumonia or Kaposi’s sarcoma. These two rare illnesses had previously been observed only in people whose immune systems had been damaged by drugs or disease. These reports triggered concern that a disease of the immune system was spreading quickly in the homosexual community. Initially called gay-related immunodeficiency disease (GRID), the new illness soon was identified in population groups outside the gay community, including users of intravenous drugs, recipients of blood transfusions, and heterosexual partners of infected people. In 1982 the name for the new illness was changed to acquired immunodeficiency syndrome, or AIDS.

While the disease was making headlines for the speed with which it was spreading around the world, the cause of AIDS remained unidentified. Fear of AIDS and ignorance of its causes resulted in some outlandish theories. Some thought the disease was God’s punishment for behaviors that they considered immoral. These early theories created a social stigma surrounding the disease that still lingers.

Scientists quickly identified the primary modes of transmission—sexual contact with an infected person, contact with infected blood products, and mother-to-child transmission. From these modes of transmission it was clear that the new illness was spread in a specific manner that matched the profile of a viral infection. In 1983 French cancer specialist Luc Montagnier and his colleagues isolated what appeared to be a new human retrovirus from AIDS patients. They named it lymphadenopathy virus (LAV). Eight months later Gallo and his colleagues isolated the same virus in AIDS patients, naming the virus HTLV-III. Eventually, scientists agreed to call the infectious agent human immunodeficiency virus (HIV). In 1985 a new AIDS-causing virus was discovered in West Africa. Named HIV-2, the new virus is closely related to the first HIV, but it appears to be less harmful to cells of the immune system and reproduces more slowly than HIV-1.

Research leading to the development of the ELISA test was conducted simultaneously by teams led by Gallo in the United States and Montagnier in France. In 1985 the ELISA test to identify HIV in blood became available, followed by the development of the Western Blot test. These tests were first employed to screen blood for the presence of HIV before the blood was used in medical procedures. The tests were later used to identify HIV-infected people, many of whom did not know they were infected. These diagnostic tests also helped scientists study the course of HIV infection in populations.

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