Acquired Immunodeficiency Syndrome (AIDS)

Acquired Immunodeficiency Syndrome (AIDS) is caused by the human immunodeficiency virus (HIV), which destroys the cells in the human body that combat infections. Although recent medical advances have caused a shift from the mindset of a terminal disease to one of a chronic, manageable condition in some areas of the world, this new approach brings challenges of its own, as the disease is eventually fatal (Ferri et. al 1997). HIV has brought about a global epidemic far more extensive than what was predicted even a decade ago. The issue of HIV/AIDS is not only relevant to medical documentation, but is complex and highly politically charged, affecting all communities regardless of race, age, or sexual orientation (Ginsberg 1995). At the end of the year 2000, it was estimated that there were 36.1 million adults and children living with HIV/AIDS, the vast majority of whom live in the developing world, with more than twenty-five million living in the continent of Africa ("Global Summary of the HIV/AIDS Epidemic, 2000" 2001).

History

The epidemic began in the late 1970s and early 1980s in sub-Saharan Africa, Latin America, the Caribbean, Western Europe, North America, Australia, and New Zealand. In the late 1980s, the epidemic continued to spread to North Africa and the Middle East, South and Southeast Asia, East Asia, and the Pacific. Only in the late 1990s did the epidemic spread significantly to Eastern Europe and Central Asia. (See Table 1 for a summary of HIV/AIDS statistics and features, including the primary mode(s) of transmission in each region.) Since 1981, the AIDS pandemic has brought sexually transmitted diseases to the center of medical

and social consciousness. Indeed, "not since the world-wide pandemic of swine influenza in 1918 have we faced a public health emergency of such tragic magnitude" (Brandt 1988, p. 151).

In response to this mysterious ailment, articles began to appear in newspapers and magazines in the United States that described an illness unofficially identified as gay-related immunodeficiency (GRID). As early as 1982, however, it became clear to the researchers at the Centers for Disease Control (CDC), that the disease was not exclusively a gay syndrome. Other groups began to get the disease: heterosexuals from sub-Saharan Africa, Haitians, prostitutes, and women who had sex with bisexual males (Tebble 1986).

The human T-cell lymphotropic virus (HTLVIII) was isolated as the retrovirus responsible for causing AIDS in 1984 (Getzel 1992; Levenson 1996). A retrovirus is a type of virus that replicates mutant strains, and then infects other cells (Gant 1998). "The virus, called HTLV-III by the Americans and LAV by the French—would eventually be designated as HIV" (Bethel 1995, p. 69). HIV-I (the most common type found worldwide) and HIV-II (found mostly in West Africa), both responsible for AIDS, are rapid replicators. The newer strains of HIV that were identified in the late 1990s are stronger and more resistant to medications.

Modes of Transmission

HIV is transmitted only through the intimate exchange of body fluids, specifically blood, semen, vaginal fluid, and mother's milk (Dane and Miller 1990). HIV is sometimes passed perinatally from mother to fetus, or through breastfeeding (Mulvi-hill 1996). HIV levels in the bloodstream are typically highest when a person is first infected and again in the late stages of the illness. High-risk behaviors include unprotected anal and vaginal intercourse (without condom) and intravenous drug use. Before blood screening began in 1986, the virus was also being contracted from transfusions and blood-clotting agents.

Testing and Diagnosis

One year after the isolation of HIV, the ELISA (enzyme-linked immunosorbent assay) test was developed, allowing detection of HIV antibodies well before the onset of any clinical manifestations, creating an opportunity for preventive therapy against opportunistic infections (Bellutta 1995). The required pre- and post-test counseling for the ELISA tests has been shown to help people to make informed decisions, cope better with their potential health condition, lead more positive lives, and prevent further transmission of HIV. Because the number of false positives is high, a positive ELISA test must be confirmed by a more specific test, the Western blot, which detects specific anti-bodies to a particular pathogen (Gant 1998). In many countries, home tests were approved in mid-1990s, and the oral collection (OraSure) for HIV antibody test was approved by the Food and Drug Administration (FDA) in the United States in 1996. These tests are not very reliable, and support such as pre- and post-test counseling is not available ("Fact Sheet 1 HIV/AIDS: The Infection" 2000).

The advent of HIV testing brought with it the need for guidelines surrounding the confidentiality of test results and anonymity of the individual during the testing process to protect that person against social stigmatization and economic exploitation. These measures are also intended to encourage widespread testing, so that medical care and support services can be instituted early in the process.

HIV attacks and destroys CD4 T-lymphocytes, which assist in the regulation of the entire immune system. CD-4 lymphocytes, also called CD-4 cells, T4cells, and CD-4 lymphocytes, are a type of blood cell important to the immune system. The loss of these cells reduces the system's ability to fight infection, increasing the risk of opportunistic infections, or infections that can take hold because a person's immune system is weak (Gant 1998). AIDS can be described as a continuum that begins with infection by the HIV virus leading to decreasing numbers of CD-4 cells and eventual progress to opportunistic diseases (Bellutta 1995).

Symptoms

HIV ranges from asymptomatic infection to severe forms of the disease (Aronstein and Thompson 1998). There is no dormant phase of the HIV infection. Rather, the body and the virus are locked in a pitched battle from the beginning. Every day the viral intruder produces a billion copies of itself, all intent on the destruction of CD-4 cells (Gorman 1996). With immune deficiency, the HIV-infected person becomes susceptible to opportunistic organisms that normally would be harmless (Aronstein and Thompson 1998).

Kaposi's sarcoma is a malignant tumor affecting the skin and mucous membranes and is usually characterized by the formation of pink to reddish-brown or bluish patches. In general, these tumors are quite rare, slow-growing, vascular in nature, and most commonly affect elderly men of Mediterranean descent. In the early AIDS cases, however, the tumors affected young white males in the United States and were found to grow and disseminate rapidly. Overwhelming infection and respiratory failure due to pneumocystis carinii pneumonia (PCP), a form of pneumonia caused by a microorganism that attacks the inner fibrous tissues of the lungs, were the leading causes of death in early AIDS cases (Bellutta 1995).

HIV-infected persons often experience acute symptoms including night sweats, sore throat, headache, fever, muscular pains, thrush, wasting, and rashes. It is estimated that more than half of the people diagnosed with AIDS at some time will display central nervous system dysfunction resulting from HIV infiltration of brain structures. The growing crisis of AIDS-related cognitive impairment ranges from mild cognitive disturbance to moderate and severe AIDS dementia complex (ADC).

Neuropsychological symptoms are typically more pronounced in the end stage of the disease; however, decreased concentration, memory loss, and confusion may be the first symptoms of AIDS.

Treatment

Researchers persist in their attempts to develop effective medical treatments to reduce the suffering of those who are HIV-infected or seriously ill with AIDS. Encouraging early treatment is crucial for persons that test HIV positive (Levenson 1996). HIV treatments include two components: first, prophylactic drugs to prevent and treat opportunistic infections, and, second, combination or three-drug combinations (also known as drug cocktails) to directly reduce replication of the virus (Linsk and Keigher 1997). Where available, the antiretroviral drug combinations (protease inhibitor combined with two or more Reverse Transcriptase inhibitors) require strict adherence to a complex drug regimen. The potential benefits and risks of the combinations are great. Many people taking drug combinations have been found to have reduced viral load to levels below the detection limits of current viral load tests, therefore appearing to be no longer HIV positive. However, the virus can easily become resistant to the medications if the regimen is not followed, often causing the viral load to increase. Many people infected with HIV are finding that eating a healthful diet, getting sufficient rest, and drinking little alcohol increase their level of functioning.

HIV/AIDS prevention through education, as well as safe-sex information, distribution of condoms, and needle exchange programs worldwide have greatly decreased the transmission of new HIV cases in many parts of the world since 1990. In addition, officials from many health organizations, including the World Health Organization (WHO), and governments from various countries, have been collaborating in an effort to address the urgent need for an HIV vaccine. Since 1991, these constituents have worked to prepare for HIV vaccine efficacy trials. In February of 1999, Thailand became the first developing nation to announce a three-year, Phase III vaccine field trial, AIDSVAX. A Phase III trial is done to determine if a vaccine is effective in protecting against infection or disease and is an important step in the evaluation process leading to licensure.

Psychosocial Issues

In the initial years of the epidemic, the complex clinical treatment dynamics, negative public attitudes, and limited personal and community resources available to people with AIDS challenged the advocacy and discharge-planning skills of many professionals (Mantell, Shulman, Belmont, and Spivak 1989). Repeated exposure to death, homophobia, negative attitudes about addictive lifestyles, antisocial behaviors, and fear of AIDS contagion have added stress to professionals employed in the health arena and supporting services (Wade, Stein, and Beckerman 1995).

Partially because disadvantaged populations are disproportionately affected by HIV/AIDS, there is often a stigma attached to the diagnosis (Diaz and Kelly 1991; Reamer 1993). People within the United States have been victims of hate crimes due to their HIV positive status. Within many countries in Africa, people have been stoned to death, or disowned when an HIV positive status was disclosed ("Fact Sheet 6 HIV/AIDS: Fear, Stigma, and Isolation" 2000). Fear and prejudice have been an integral part of this epidemic since its inception, often exacerbating already difficult situations for those dealing with the diagnosis of HIV/AIDS (Ryan and Rowe 1988). Responses to this difficult reality include depression, claiming illness is something other than HIV/AIDS, withdrawal from loved ones and work environments, and even suicide (Ellenberg 1998).

Global Implications

The challenges of HIV vary enormously from place to place, depending on how far and fast the virus is spreading, whether those infected have started to fall ill or die in large numbers, and what sort of access they have to medical care. In all parts of the world except sub-Saharan Africa, more men than women are infected with HIV and dying of AIDS. Men's behavior—often influenced by harmful cultural beliefs about masculinity—makes them the prime casualties of the epidemic. Male behavior also contributes to HIV infections in women, who often have less power to determine where, when, and how sex takes place ("Global Summary of the HI/AIDS Epidemic" 2001). Men's enormous potential to make a difference when it comes to curbing HIV transmission, caring for infected family members, and looking after orphans and other survivors of the epidemic has been noted in many countries.

As the number of children orphaned by HIV/AIDS rises, some calls have been heard for an increase in institutional care for children. This solution is impracticably expensive. In Ethiopia, for example, keeping a child in an orphanage costs about U.S. $500 a year, more than three times the national income per person. One solution developed by church groups in Zimbabwe is to recruit community members to visit orphans in the homes where they live—either with foster parents, grandparents or other relatives, or in child-headed households. Households caring for orphans are provided with clothing, blankets, school fees, seeds, and fertilizer as necessary, and communities contribute to activities such as farming communal fields and generating income to support the program. This community-driven approach to orphan support has been reproduced all over Zimbabwe, and replicas are now sprouting up in other African countries ("Global Summary of the HIV/AIDS Epidemic, 2000" 2001).

Internationally, a campaign by AIDS activists succeeded in 2000 in getting drug companies to lower prices for the antiretroviral medications. But even at prices 90 percent lower than in the United States, drugs are still beyond the reach of most Africans. There is a debate among those working on AIDS in Africa and elsewhere about whether the current emphasis on drugs is taking the spotlight off prevention, where many feel it should be. Apart from the staggering costs of drugs, world health leaders say huge sums of money are needed just for basic AIDS prevention and care in Africa and other developing nations ("Confronting AIDS" 2001).

UNAIDS and WHO now estimate that the number of people living with HIV or AIDS at the end of the year 2000 stands at 36.1 million, 50 percent higher than what the WHO's Global Programme on AIDS projected in 1991 ("Global Summary of the HIV/AIDS Epidemic, 2000" 2001). The unique situation in various countries and parts of the world will be presented in order to catch a glimpse of the diverse face of HIV/AIDS in the early twenty-first century. In each area, access to health care and medication, HIV transmission, and political responses will be considered.

Botswana. The first AIDS cases in Botswana were reported in 1985. An estimated 36 percent of adults were HIV positive as of 2000. The highest HIV prevalence rate is among twenty to thirty-nine year olds. An estimated 300,000 adults and 26,000 children under age five are living with HIV/AIDS. The mean age of death due to AIDS in Botswana is twenty-five in females and thirty-five in males, the reproductive and economically productive years.

Unlike many other African countries, Botswana has a strong and developed infrastructure that provides people with such social services as education and health care. The government, as well as many companies, are trying to provide antiretrovirals to all who need them, regardless of their ability to pay. Well-supplied hospitals and adequate foreign reserves make it easier for Botswana than for other African countries to provide the drugs. But even here, where the annual per capita income is $3,700 a year (high for Africa), many people remain poor. In the next ten years AIDS will slice 20 percent off the government budget, erode development gains, and bring about a 13 percent reduction in the income of the poorest households ("Global AIDS Program Countries" 2001).

The hope of treatment encourages people to be tested, and testing is considered crucial for prevention. Even as efforts to treat people get underway, prevention remains the highest priority, including visits to local bars to show people how to prevent HIV using male and female condoms and going to schools to keep the next generation HIV-free.

Brazil. HIV began to spread in Brazil in the 1980s. At of the end of the year 2000, slightly more than 196,000 cases of AIDS had been reported in Brazil, the largest number in South America. Brazil is unique among the Latin American countries in that it provides those people with HIV infection antiretroviral therapy free of charge if they meet the national medical guidelines for treatment.

An estimated 12,898 pregnant women had HIV infection in 1998, while 536,920 people between the ages of fifteen and twenty-nine were infected with HIV. Between the years 1978 and 1999, 29,929 children were orphaned in Brazil due to AIDS. Although rates of AIDS are decreasing among men who have sex with men and injection drug users, the rate of heterosexual transmission of AIDS is increasing. In many municipalities, especially along the coast, the ratio of AIDS between men and women is approaching 1:1 ("Global AIDS Program Countries" 2001).

South Africa. The HIV/AIDS epidemic started in sub-Saharan Africa in the late 1970s and early 1980s. Half of all HIV positive people in the nine southern African countries hardest hit by the pandemic live in South Africa. The government estimates that 4.2 million persons, and 19.9 percent of the adult population, are infected with HIV, and by 2010 adult HIV prevalence could reach 25 percent, similar to infection rates in neighboring Zimbabwe and Botswana. In 1998 South Africa had approximately 100,000 AIDS orphans, and by 2008, 1.6 million children will have been orphaned by AIDS ("Global AIDS Program Countries" 2001).

Reasons cited for high rates of HIV/AIDS in South Africa are the realities of migrant labor, high prevalence of sexually transmitted disease, and presence of multiple strains of the disease. Exacerbating factors include a society in denial about an overwhelming epidemic that is ravaging the lives and bodies of many persons within a context of poverty and a thriving commercial sex work industry.

Families are especially hard hit by HIV/AIDS in South Africa. One in five pregnant women in South African clinics is HIV positive. Studies have shown that treating pregnant African women with the drug AZT significantly reduced the risk that they would transmit the virus to their babies. However, if these women then breastfed their infants, the risks of transmission rebounded, making it more urgent than ever to find acceptable alternatives to breastfeeding among infected African women. The AIDS virus accounts for most pediatric cases in hospitals. The worst is yet to come because most of the infected have not yet developed AIDS symptoms, and many still feed an infection spiral that is creating about 1,700 new cases every day.Thailand. Thailand has experienced a rapidly escalating and severe HIV epidemic since 1988. Among the sixty million inhabitants of Thailand, as many as 800,000 people are currently believed to be living with HIV. Despite innovative and persistent prevention efforts, HIV continues to spread rapidly, particularly among Thailand's population of injection drug users (IDUs). Methadone treatment, education, counseling on HIV prevention, and easy access to sterile needles have helped to slow the epidemic. Yet, among IDUs in Bangkok, 6 percent continue to become infected each year.

As part of the Thai National Plan for HIV vaccine research, the Bangkok Metropolitan Administration is leading the three-year collaborative research trial to evaluate the ability of AIDSVAX to prevent HIV infection among uninfected IDUs in Bangkok, Thailand. For people infected with HIV, the Thai government and health officials feel very strongly that treatment should follow the protocols that they have established for their country. Therefore, the triple drug therapies currently being used elsewhere are not considered feasible for use in Thailand, not only because of cost constraints, but also because of issues related to the complexity of the regimen, the necessary follow-up and monitoring of patients, and tolerance to the therapies.

United States. In the early 1980s, a number of unexplainable phenomena began to surface across the United States. As the incidents of pneumocystic pneumonia and Kaposi's sarcoma were reported to the Center for Disease Control, a pattern began to emerge. The CDC first published a report reflecting these observations in June of 1981, identifying all of the people demonstrating these symptoms as gay men (Black 1985). In the absence of services in established medical centers and social agencies, many gay men and lesbians joined with activists to establish community-based AIDS service organizations to meet the needs of people affected by HIV. The Names Project Quilt, or AIDS Quilt, has been an important mechanism for people within the United States to recognize the lives of those who have died of HIV/AIDS. The quilt was first displayed in Washington, DC, in 1987, and then in its entirety for the last time in October of 1996, with more than 30,000 panels.

In the United States, as of December 2000, 774,467 AIDS cases had been reported including 640,022 cases among men and 134,441 among women. The main modes of transmission for adults living with HIV/AIDS were men having sex with men, intravenous drug users, and heterosexual transmission. In the United States HIV and AIDS have disproportionately affected the most disadvantaged and stigmatized groups in American society (Barbour 1994). Analyzed by race, 330,160 AIDS cases have been reported among whites, 292,522 among blacks, and 141,694 among Hispanics.

In early 1998, AIDS deaths in the United States dropped by 47 percent. "In recent years, the rate of decline for both cases and deaths began to slow, and in 1999, the annual number of AIDS cases appears to be leveling, while the decline in AIDS deaths has slowed considerably" ("A Glance at the HIV Epidemic" 2001, p. 3). Overall, HIV prevalence rose risen slightly, mainly because antiretroviral therapy is keeping HIV positive people alive longer. Thousands of infections are still occurring through unsafe sex between men. In this era in which few young gay men have seen friends die of AIDS, and some mistakenly view antiretrovirals as a cure, there is growing complacency about the HIV risk, judging from reports of increased sexual risk behavior among this population.

Conclusion

The family is greatly affected in all cases of HIV/AIDS, regardless of where the person might live. Issues such as safe sex practices, planning for care of children during parents' illness and after death, dealing with prejudices and unmet expectations within the family unit, coming out as a homosexual, admitting to intravenous drug use, or to sexual activity with multiple partners, are often on the forefront during this difficult time. Until a vaccine is approved and widely disseminated, people must avoid risky behaviors in order to curb the spread of this devastating disease. One of the primary issues is to support extended family members who are taking in children orphaned by AIDS, while grieving the great loss of loved ones.

See also:Chronic Illness; Death and Dying; Dementia; Family Planning; Hospice; Sexuality; Sexuality Education; Sexually Transmitted Diseases; Stress

Bibliography

Aronstein, D. M., and Thompson, B. J., eds. (1998). HIV and Social Work: A Practitioner's Guide. Binghamton, NY: The Harrington Park Press.

Barbour, R. S. (1984). "Social Work Education: Tackling the Theory-Practice Dilemma." The British Journal of Social Work 14:557–577.

Bellutta, H. P. (1995). "AIDS." In Encyclopedia of Marriage and the Family, ed. D. Levinson. New York: Simon and Schuster Macmillan.

Bethel, E. R. (1995). AIDS: Readings on a Global Crisis. Boston: Allyn and Bacon.

Black, D. (1985). The Plague Years: A Chronicle of AIDS the Epidemic of our Times. New York: Simon and Schuster.

Brandt, A. (1988). "The Approaching Epidemic." Journal of Social Work and Human Sexuality 6:151–154.

Broder, S., and Gallo, R. C. (1984). "A Pathogenic Retrovirus (HTLV-III) Linked to AIDS." New England Journal of Medicine 311:1292–1297.

Dane, B. O., and Miller, S. O. (1990). "AIDS and Dying: The Teaching Challenge." Journal of Teaching in Social Work 4:85–100.

Diaz, Y. E., and Kelly, J. A. (1991). "AIDS-Related Training in United States Schools of Social Work." Social Work 36(1):38–42.

Ellenberg, L.W. (1998). "HIV Risk Assessment in Mental Health Settings." In HIV and Social Work: A Practitioner's Guide, ed. David M. Aronstein and Bruce J. Thompson. New York: The Harrington Park Press.

Ferri, R.; Fontaine, M.; Gallego, S. M.; Grossman, H. A.; Lynch, V. J.; Shiloh-Cryer, A.; Zevin, B.; and Zizzo, W., eds. (1997). "AIDS Deaths Drop 19% in United States, in Part from New Treatment." HIV Frontline: A Newsletter for Professionals who Counsel People Living with HIV 30:6.

Gant, L. M. (1998). "Essential Facts Every Social Worker Needs to Know." In HIV and Social Work: A Practitioner's Guide, ed. David M. Aronstein and Bruce J. Thompson. New York: The Harrington Park Press.

Getzel, G. S. (1992). "AIDS and Social Work: A Decade Later." Social Work in Healthcare 17(2):1–9.

Ginsberg, L. (1995). "AIDS." Social Work Almanac, 2nd edition. Washington, DC: NASW.

Gorman, C. (1996). "The Exorcists." Time 148:64–66.

Levenson, D. (1996). "Home Testing: Boon to the AIDS Battle?" NASW Press (September):3.

Linsk, N. L., and Keigher, S. M. (1997). "Of Magic Bullets and Social Justice: Emerging Challenges of Recent Advances in AIDS Treatment." Health and Social Work 22:70–74.

Mantell, J. E.; Shulman, L. C.; Belmont, M. F.; and Spivak, H. B. (1989). "Social Workers Respond to the AIDS Epidemic in an Acute Care Hospital." Health and Social Work 14:41–51.

Mulvihill, C. K. (1996). "AIDS Education for College Students: Review and Proposal for Research-Based Curriculum." AIDS Education and Prevention 8:11–25.

Reamer, F. G. (1993). "AIDS and Social Work: The Ethics and Civil Liberties Agenda." Social Work, 38(4): 412–419.

Ryan, C. C., and Rowe, M. J. (1988). "AIDS: Legal and Ethical Issues." Social Casework, 69(6):324–333.

Tebble, W. E. M. (1986). "AIDS and AIDS Related Conditions: Effects on Gay Men and Issues for Social Workers." Australian Social Work 39:13–18.

Wade, K.; Stein, E.; and Beckerman, N. (1995). "Tuberculosis and AIDS: The Impact on the Hospital Social Worker." Social Work in Health Care 21:29–41.

other resources

"Confronting AIDS." (2001). NewsHour with Jim Lehrer Transcript Online Focus. Available from http://www.pbs.org/newshour/bb/health/jan-june01/aids_2-21.html.

"Fact Sheet 1 HIV/AIDS: The Infection." (2000). World Health Organization. Available from http://www-int/whosis/statistics/factsheets-hiv-nurses/fact-sheet-1/index.html.

"Fact Sheet 6 HIV/AIDS: Fear, Stigma and Isolation." (2000). World Health Organization. Available from http://www-int/whosis/statistics/factsheets-hiv-nurses/fact-sheet-6/index.html.

"A Glance at the HIV Epidemic." (2001). Centers for Disease Control, Atlanta, Georgia. Available from http://www.cdc.gov/hiv/aidsupdate.htm.

"Global AIDS Program Countries." (2001). Center for Disease Control, Atlanta, Georgia. Available from http://www.cdc.gov/nchstp/od/gap/text/countries/south_africa.htm.

"Global AIDS Program Countries." (2001). Center for Disease Control, Atlanta, Georgia. Available from http://www.cdc.gov/nchstp/od/gap/text/countries/brazil.htm.

"Global Summary of the HIV/AIDS Epidemic, 2000." (2001). Joint United Nations Programme on HIV/AIDS and World Health Organization, Geneva, Switzerland. Available from http://www.unaids.org/was/2000/wad00/files/WAD_epidemic.html.

HOPE HASLAM STRAUGHAN