HIV/AIDS Prevention in American Indian and Alaska Native Communities

Volume 14, No. 4 - Summer 2003
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Abstract

The American Indian/Alaska Native population comprises an estimated 2.5 million people, 28% of whom are youth and young adults at risk of health problems, including HIV/AIDS. Since 1998, new HIV infections, AIDS cases, and AIDS-related deaths have increased steadily among the nation’s Indigenous people. We discuss the health-risk behaviors of American Indian/Alaska Native youth and young adults, attendant factors that lead to HIV infection, and cultural characteristics and values that may contribute to advancement of the disease. This article provides a rationale for developing culturally appropriate HIV/AIDS prevention curricula and instructional strategies for Native people.

Key Words: American Indians/Alaska Natives, cultural diversity, HIV/AIDS, Indigenous, Native. Note: The terms American Indian/Alaska Native, Indigenous, and Native are used synonymously in this article and are capitalized purposefully.

The American Indian/Alaska Native population increased about 32% during the past decade and now comprises a little less than one percent (0.9%) of the total population of the United States, according to the Bureau of Census (2001). The nation’s Indigenous people are dispersed throughout urban areas, reservations and nearby communities, and remote villages of Alaska.

The health status of American Indian/Alaska Native youth and young adults is poorer on all indicators than the overall population. They also have more social and behavioral factors that increase vulnerability to HIV/AIDS. Most people are infected with HIV as adolescents and young adults through injection drug use and unsafe sex practices. AIDS symptoms manifest about 10 years after infection. Once a person is infected with the virus, the immune system begins a process of viral replication and immune cell destruction. Eventually, the immune system is compromised, and an individual becomes vulnerable to opportunistic infections that assault the body and result in death.

The purpose of this article is to discuss health-risk behaviors of Native youth and young adults in reference to HIV/AIDS, variables that contribute to HIV infection, and cultural traits and values that may influence this population’s health-risk behaviors. Current HIV/AIDS prevention programs have little positive impact on Indigenous populations; consequently, there is a vital need to develop culturally competent prevention curricula and instructional strategies.

HIV/AIDS and Native Young Adults

AIDS-related illnesses are the fifth leading cause of death among all Americans between 25 and 44 years of age. The number of HIV/AIDS cases reported among American Indians/Alaska Natives accounts for about 1% of reported cases nationwide, which is close to the 0.9% that would be expected. However, the Centers for Disease Control and Prevention (CDC) surveillance data indicate the disease is intensifying among Native people and other ethnic communities of color, and there is reason to believe the CDC underestimates the actual extent of the problem. The number of deaths among Native people with AIDS has remained constant or increased steadily from 1996 through 2001. The estimated 1,286 cumulative AIDS-related deaths among American Indians/Alaska Natives since the beginning of the epidemic account for slightly more than half of the total 2,537 AIDS cases identified within this population (CDC, 2002).

Although most of the Native people with HIV/AIDS are men, the numbers of women and children are growing. Approximately 467 American Indian/Alaska Native women have been diagnosed with HIV/AIDS. Most women report AIDS exposure through injection drug use and heterosexual relationships with HIV-positive and high health-risk partners (CDC, 2002). HIV infection is transmitted efficiently through vaginal intercourse (Faryna & Morales, 2000).

Injection drug use is the most critical cofactor that places American Indian/Alaska Native women at risk of HIV/AIDS (CDC, 2002). Disproportionately high levels of alcohol and injection drug use among young women result in increased incidences of fetal alcohol effects, fetal alcohol syndrome, as well as drug and HIV/AIDS exposure among their children. As of December 2001, pediatric AIDS cases reported among Native children younger than 13 years old reached a total of 44 cases with exposure primarily through maternal transmission. In addition, 128 new HIV infections and 194 new AIDS cases were reported among Native youth and young adults (CDC, 2002).

Approximately 2,030 American Indian/Alaska Native men have been diagnosed with HIV/AIDS, according to the CDC’ s 2002 report. Most men report AIDS exposure through male-to-male sex, injection drug use, a combination of same sex behaviors and injection drug use, and heterosexual contact.

A new generation of men from ethnic communities of color has emerged as the group most affected by HIV/AIDS. There is a resurgence of the disease among 15-22-year-old gay, bisexual, and transgender Native men. Rowell (1996) differentiates a group of young, gay American Indian/Alaska Native men who grew up in the age of AIDS and were taught that their sexual orientation and behaviors are unnatural. They perceive sex with barriers as unnatural, resist condom use, and want to share others’ bodies without encumbrances.

There is no precise picture of the extent of HIV/AIDS among Indigenous people because of the lack of detailed CDC surveillance data and underreporting. This creates the misperception that the epidemic is not as pervasive as with other ethnic communities of color. Underreporting occurs for a number of reasons. First, American Indians/Alaska Natives are often mislabeled as Asians, Caucasians, and Hispanics because of health workers’ subjective observations of physical characteristics and Spanish surnames. Second, there is considerable variance in reporting procedures in the 10 states where two-thirds of the Indigenous population lives. Some states lack confidentiality policies; others do not report HIV infections.

Third, most tribes do not convey HIV/AIDS surveillance statistics to CDC, Indian Health Service (IHS), or state departments of health, sometimes because they lack the resources and sometimes because they are concerned about potential breaches of confidentiality (Maldanado, 1999). Fourth, turf issues, lack of communication, and competition for fiscal resources impede precise reporting of HIV/AIDS cases by IHS, tribal governments and health departments, and American Indian/Alaska Native nonprofit organizations (Rowell, 1996). Finally, there are not enough data to describe the HIV/AIDS status of a specific tribe or the Native urban community because the data are aggregated as American Indian/Alaska Native to adjust for small sample sizes in national surveys. Lack of clear-cut data obscures accurate indicators of HIV/AIDS trends among Native groups.

The threat of an AIDS pandemic raises specters of previous holocausts in which entire Indigenous civilizations were decimated by smallpox, tuberculosis, syphilis, and influenza. Rowell states optimistically that “AIDS is just another in a long line of challenges…and like the others, it too will be overcome” (1997, p. 94). His statement epitomizes the resilience in American Indian/Alaska Native people.

Nevertheless, it is very important to identify conditions that lead to HIV infection and try to avoid A future holocaust. HIV/AIDS has the potential to become the primary infectious killer of American Indians/Alaska Natives during the 21st century. In the majority of cases, the disease is fatal, and a scientific cure is not on the immediate horizon.

Native peoples’ decisions to engage in health-risk behaviors that heighten susceptibility to HIV infection must be considered in light of complex origins, ecological adaptations, and socio-historical experiences. These variables include (a) oppression, prejudice, and racism; (b) poverty and inadequate access to health care; (c) cultural views regarding sexual orientation; and (d) issues related to health, death, and dying. Educators must acknowledge these perspectives and design culturally responsive HIV/AIDS prevention programs that reduce spread of the disease among American Indians/Alaska Natives.

Oppression, Prejudice, and Racism

Historical trauma and current social processes experienced by American Indians/Alaska Natives lead to physical, cultural, and psychological genocide and complex feelings of internalized shame, negative self-image, depression, and powerlessness (Hunt, Gooden, & Barkdull, 2001). They are primary reasons for the suffering and chronic sorrow that confront many Native people (Archambault, Hall-Hammeron, Bush, & Paulson, 1999). Intergenerational cycles of child abuse and neglect, domestic violence, victimization, and excessive alcohol and substance abuse render Indigenous people vulnerable to HIV/AIDS (Vernon, 2002).

Socioeconomic and Environmental Resources

Race and ethnicity themselves are not health-risk factors yet they equate with determinants that perpetuate risky behaviors among American Indians/Alaska Natives (Maldanado, 1999). The legacy of prejudice and racism results in excessive unemployment, poverty, and welfare dependence in Indigenous people especially those who live on reservations and in Alaska Native villages. Many adolescents and young adults in these settings experience high incidences of substance abuse. The combination of conditions culminates in inadequate educational opportunities and low levels of education that perpetuate cycles of poverty and attendant high birth rates.

Vernon (2002) postulates a relationship between HIV/AIDS, alcohol and drug use, and domestic violence among Indigenous women. She believes women are susceptible to HIV infection when they lack self-respect and experience physical, psychological, and sexual abuse or rape. A sense of powerlessness limits their ability to remain safe in domestic settings and to insist on a monogamous relationship or condom use.

Moreover, gay Native men who were abused sexually as children may exhibit heightened levels of sexual promiscuity. Julian Manuelito, a gay Navajo man in his mid-30s who is living with AIDS, believes he would not have contracted the disease if he were not an incest survivor. “The only way I thought I could get love was through sex.” (Personal communication, November 9, 2001).

Poverty also advances poor health and lack of general well being among many Indigenous families. About 27% of American Indians/Alaska Natives lack adequate health insurance and health care (U.S. Department of Commerce Bureau of Census, 2000). These factors contribute to their (a) restricted awareness of HIV/AIDS and other sexually transmitted diseases; (b) delayed testing, counseling, and diagnosis; and, (c) limited access to physicians experienced in treatment regimens. IHS clinics fail to convince patients that their diagnosis would be confidential and often fail to provide culturally sensitive health care (Maldanado, 1999).

Cultural Attitudes and Homosexuality

Many traditional American Indian/Alaska Native cultures honored and respected people who assumed identities of the opposite sex, rather than carrying out typical male or female roles, and whose identity transformations were considered integral to the sacred web of life and society. People with alternative gender styles were perceived as unique because they viewed the world differently from ordinary people and possessed special qualities and characteristics, such as the gift of prophesy; their uniqueness resulted from a special calling (Brown, 1997). These beliefs provide some modern Indigenous populations with a worldview that accepts gay and lesbian identities and emphasizes their sacred status (Champagne, 1997). The Dakota Santee historically, however, relegated people with alternative gender styles to peripheral social stations within tribal kinship structures and forbade their acceptance and sharing in communal activities. Young men who did not embrace defined male roles and responsibilities were declared socially dead and ostracized from family and tribal members (Brown, 1997).

Homosexual Native men and women often were identified as two-spirit people, a literal translation of an Algonquin term, niizh manitoag. An estimated 200 tribal specific terms characterize two-spirit people; the terms acknowledge that each person is born of a union between male and female and carries both masculine and feminine qualities (Rowell, 1996). Today, the term “two-spirit” is a culturally fitting expression for gay, lesbian, bisexual, or transgender identities that permits homosexual Native people to recreate themselves with a strong sense of personal pride that unites the two parts of their existence (Rowell, 1996).

Most traditional Lakota cultural practices viewed two-spirit people as esteemed tribal members who were accorded prestige and high social status due to their sacred powers, talents, and abilities. They were included in the tribe’s organizational hierarchy and often served as counsels regarding tribal policy. Despite some tribes’ acceptance of homosexuality today, other present-day tribal communities’ attitudes range from indifference to open hostility and violence (Rowell). Consequently, many gay and lesbian American Indians/Alaska Natives may experience intimidation, ridicule, and bullying and suffer gender inequities.

Manuelito feels that many members of today’s Navajo Nation, with the exception of tribal elders, have lost touch with their traditional positive feelings toward two-spirit people. He believes Christian values and mainstream cultural incursion into Navajos’ lives replace Native spiritual ways (Personal communication, November 9, 2001). Vernon (2002) validates these feelings, saying, “Gender variances and behaviors, which were accepted as normal aspects of tribal life, became viewed as deviant and immoral” (p.125). Consequently, there is a large well-hidden and closeted population of Navajo men who identify as bisexual or heterosexual rather than reveal their same sex orientation. They lead secretive lives that include unsafe sex behaviors, and they lack easy access to HIV/AIDS information and services.

Many young gay, bisexual, and heterosexual Navajo men often engage in male-to-male sex in urban settings, return to reservations, and infect other Navajos, both male and female (Rowell, 1997). Yet young, gay Navajos consider HIV/AIDS as a problem peculiar to older men or urban Indians and not an issue that affects younger reservation and rural people.

Few if any HIV/AIDS prevention programs target men who have sex with men and those who engage in combinations of male-to-male sex and injection drug use. These groups represent most of the HIV/AIDS cases among American Indians/Alaska Natives. It is imperative that educators develop HIV/AIDS prevention programs that balance traditional cultural values and healing ceremonies with Western medicine practices to meet their needs (Rowell, 1996).

Perceptions about Health Issues, Death, and HIV/AIDS

American Indians/Alaska Natives value spirituality and living in harmony with the Creator, nature, and humanity. For example, Lakota cultural traditions focus on respecting and maintaining balance with the earth and learning from the wind and coyotes. Traditional Navajos “Walk in Beauty” and preserve balance with nature.

Traditional Native people may attribute illnesses, misfortunes, and disabilities to both supernatural and natural causes. Supernatural origins include witchcraft, spells, spirit loss, and various other forces. Natural causes include imbalance and disharmony that result from acculturation, breaching cultural taboos, and other accidents (Joe & Malach, 1998). Hopi Indians, for instance, consider illness and disability as transgressions from the traditional Hopi Way; those who deviate become vulnerable to sickness and injury.

Native people often turn to traditional rituals and healing ceremonies to initiate therapeutic processes, lessen the negative effects of health-related conditions, and protect them from illness in the future. The presence of HIV/AIDS results in heightened numbers of Indigenous people who turn to healing rites and spiritual leaders for education, strength, guidance, and good health. For instance, many Lakota individuals participate in Sun Dance ceremonies where they seek knowledge about personal vision quests, dreams, and direction to their sacred life roles and futures (Champagne, 1997). Some dancers may be recovering alcoholics and substance users who use the rites to attain and maintain sobriety; others with infectious diseases, including HIV/AIDS, seek good health and healing.

Many American Indian/Alaska Natives consider death as a continuation of life’s journey and, therefore, as natural with old age; untimely deaths may be attributed to witchcraft (Joe & Malach, 1998). They believe that spoken words have great power; therefore, conversations about health issues, disability, and death are taboo because they may precipitate self-fulfilling prophecies (Rowell, 1996). Curricula about HIV/AIDS risk behaviors and interventions should center on good health and respect for life rather than on sickness, death, and burial.

The term HIV/AIDS may not have meaning in various Native languages and, therefore, must be discussed in English, which is a second language for many people. Traditional Navajos, for example, generally do not talk about sex — heterosexuality, homosexuality, or bisexuality. Therefore, conversations about the disease must include extensive descriptions in both Navajo and English to convey concepts and meaning. It is imperative for educators and health professionals to ensure sensitivity to Native cultures when defining HIV risk behaviors and discussing prevention and intervention strategies.

Conclusion

Spread of HIV/AIDS among American Indian/Alaska Native populations has the potential to wreak havoc on families and communities, disrupt economic development, and diminish ethnic and cultural heritage. Current efforts to raise understanding about HIV infection, transmission, and prevention may be contrary to cultural norms, knowledge levels, and behavior patterns. As a result, programs are ineffective in reducing health-risk behaviors.

HIV/AIDS prevention programs for Native people face many challenges, including need for (a) current epidemiological data regarding HIV infections to estimate future AIDS cases; (b) behavioral research about sexual practices, especially among gay, lesbian, bisexual, and transgender persons as well as injection drug users; and (c) holistic views that discuss risk reduction in light of advantages and disadvantages of unprotected sexual behaviors, injection drug use, and excessive alcohol consumption (Rowell, 1996). Moreover, strategies must be initiated to diminish the negative effects of economic, environmental, and social vulnerabilities, such as poverty, unemployment, substance abuse, domestic violence, and sexually transmitted diseases on health-risk behaviors (UNAIDS Inter Agency Task Team on Education, 2002; Vernon, 2002).

Finally, professionals must undergo a change of heart, learn Native traditions and cultures, and walk in new moccasins that are rooted in compassion and knowledge as a basis for far-reaching HIV/AIDS prevention education efforts (Hunt et al., 2001, p. 183). Future discussions and actions must be from the heart because they will have an impact on generations of American Indians/Alaska Natives.

Culturally competent prevention strategies should be grounded in the reality of Native youths’ lives and should consider the influences of cultural mores, language, and spiritual values. The reader is referred to Sileo and Gooden (2002) for discussion of innovative, culturally sensitive and responsive curricula and instructional strategies that complement Indigenous people. American Indians/Alaska Natives have triumphed over many challenges throughout the years. They are resilient people who will surmount the current challenges of HIV/AIDS.

References

Archambault, J., Hall-Hammeron, P., Bush, V., & Paulson, S. (1999). Foster parent training: Extending our families through unity. Bismarck, ND. Native American Training Institute.

Brown, L. B. (1997). Men and women, not-men and not-women, lesbians and gays: American Indian gender style alternatives. In L. B. Brown (Ed.). Two spirit people: American Indian lesbian women and gay men (pp. 5-20). New York: The Haworth Press, Inc.

Centers for Disease Control and Prevention. (2002). U.S. HIV and AIDS cases reported through December 2001. HIV/AIDS surveillance report: Year-end edition, 13(2), 1-41. Retrieved October 22, 2002, from <www.cdc.gov/hiv/stats/hasr1302.htm>.

Centers for Disease Control and Prevention. (2001). HIV incidence among young men who have sex with men — Seven U.S. cities, 1994-2000. Morbidity and Mortality Weekly Report 2001; 50(21), 440-444. Retrieved June 1, 2001, from <www.cdc.gov/mmwr>.

Champagne, D. (1997). Preface: Sharing the gift of sacred being. In L. B. Brown (Ed.). Two spirit people: American Indian lesbian women and gay men (pp. xvii-xxi). New York: The Haworth Press, Inc.

Faryna, E. L. & Morales E. (2000). Self-efficacy and HIV-related risk behaviors among multiethnic adolescents. Cultural Diversity and Ethnic Minority Psychology, 6, 42-56.

Hunt, D, E., Gooden, M., & Barkdull, C. (2001). Walking in moccasins: Indian child welfare in the 21st century. In A. L. Sallee, H. A. Lawson, & K. Briar-Lawson (Eds.). Innovative  practices with vulnerable children and families (pp. 165-187). Dubuque, IA: Eddie Bowers Publishing Co., Inc.

Joe, J. R. & Malach, R. S. (1998). Families with Native American roots. In E. W. Lynch & M. J. Hanson (Eds.). Developing cross-cultural competence (2nd. Ed.) (pp. 127-164). Baltimore: Paul H. Brookes.

Maldanado, M. (1999). HIV/AIDS & Native Americans. Washington, DC: National Minority AIDS Council.

Rowell, R. (1996). HIV prevention for gay/bisexual/two-spirit Native American men: A report of the national leadership development workgroup for gay/bisexual/two-spirit Native American men. Oakland, CA: National Native American AIDS Prevention Center.

Rowell, R. (1997). Developing AIDS services for Native Americans: Rural and urban contrasts. In L. B. Brown (Ed.). Two spirit people: American Indian lesbian women and gay men (pp. 85-95). New York: The Haworth Press, Inc.

Sileo, T. W. & Gooden, M. A. (2002). HIV/AIDS prevention education: Culturally competent strategies for American Indian/Alaska Native youth and young adults. University of Hawaii at Manoa.

UNAIDS Inter Agency Task Team on Education. (May 2002). HIV/AIDS and education: A strategic approach. New York.

U.S. Department of Commerce Bureau of the Census. (2001). Profiles of general demographic characteristics 2000. Retrieved August 8, 2001 from <www.census.gov/prod/cen2000/dpl/2khoo.pdf>.

U.S. Department of Commerce Bureau of Census. (2000). Facts for Features: American Indian Heritage Month November 2000. Retrieved October 23, 2000 from <www.census.gov/Press-Release/www/2000/cb00-158.html>.

Vernon, I. S. (2002). Violence, HIV/AIDS, and Native American women in the twenty-first century. The American Indian Culture and Research Journal, 26(2), 115-133.

Thomas W. Sileo is a professor of special education at the University of Hawaii at Manoa, who has specialized for the last eight years in culturally competent HIV/AIDS prevention education. Myrna A. Gooden (Turtle Mountain Ojibwe) is a doctoral student and adjunct instructor in the Graduate School of Social Work at the University of Utah.

Correspondence regarding this manuscript should be addressed to: Thomas W. Sileo, professor, Department of Special Education, College of Education, University of Hawaii at Manoa, 1776 University Avenue, Wist Hall 106, Honolulu, HI 96822. Phone (808) 956-4281, fax (808) 956-4345, or email <sileo@hawaii.edu>.


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