HIV/ AIDS AND SOUTH ASIAN AMERICANS: IS THERE A PROBLEM?

1. HIV/ AIDS AND SOUTH ASIAN AMERICANS: IS THERE A PROBLEM? Linda L. Groetzinger, A.M. School of Public Health University of Illinois at Chicago American Public Health Association 2001

2. Yes, Two Problems!1. Lack of Data2. Attitudes about Attitudes

3. WHAT WE KNOW AND DON’T KNOW • Epidemiology • Risks, Knowledge, Attitudes, Behavior • HIV/AIDS in South Asia • South Asian Cultural Strengths • Recommendations

4. EPIDEMIOLOGY: HIV/AIDS AND APIAS • APIAs = 4.2% of Americans (2000 Census) • Almost 1% of Reported AIDS Cases (12/00) • 5,728 AIDS Cases Reported (12/00) • 380 New AIDS Cases Reported, 2000 • 3.4/100,000: Rate of New Infections, 2000 • 3,055 Known Deaths: 2,724 Males, 331 Females (12/00) (C.D.C, 2001)

5. WHAT’S WRONG WITH THIS PICTURE? • South Asian population(s) not identified • Distribution of APIAs / South Asians differs widely by region • Undercounting, underreporting • Barriers to access • Scant detailed studies, diverse patterns • Late access (rates of pcp, preventable and treatable: Eckholdt and Chin, 1997)

6. Asian and Pacific Islander Americans: How Many? • Asians Americans, U.S. 1990 Census: 6,908,638 = 2.8% • Asians and Pacific Islanders, U.S. 2000 Census: (alone & in combination): 11,898,828 = 4.2% = 72% Increase • Note: Definitions Change

7. South Asian Americans: How Many? (Selected Locales) New York City, 2000 (APIA Alone) • Asian Indian: 170,899 = 80.7% Increase • Bangladeshi: 19,148 = 286% Increase • Pakistani: 24,099 = 78.5% Increase • Sri Lankan: 2,033 = 150% Increase

8. South Asian Americans: How Many? (Selected Locales) • Illinois, 2000 • Asian and Pacific Islander Americans: 423,603 = 3.4% • Asian Indian: (# 1 of APIA) 124,723 = 1.0% Other Asian:(Incl. Bangladesh, Bhutan, Nepal, Pakistan, and others) 38,786 = .3%

9. Undercounting, Underreporting • Misidentifying race/ ethnicity (Kelly, et al, 1996, recalculated AIDS rates: up 33% for API, vs 23% for Latinos.) • Misleading birthplace information • Mistaken impressions of interviewer • Surname assumptions • “Model Minority” assumptions

10. Barriers to Access, Data Collection • Immigration regulations and perceptions • Linguistic and cultural barriers • Lack of understanding health care system • Lack of insurance • Fear/ distrust of social service institutions • Fear of breach in confidentiality • Stigma re: health/illness/sex/drugs/help

11. HIV/AIDS Data on API Americansand South Asian Americans • 78% of APIA AIDS cases (thru 12/98) were in 5 states: California, Hawaii, New York, Texas, & Washington • 72% of APIA AIDS cases attributed to MSM, (compared to 56% overall U.S., through 12/2000, CDC) • APIA/AIDS prevalence: 1.4% - 27.8% (Review by Sy, et. al, 1998) • API/HIV prevalence (Calif. STD Clinics, 1999): 3.4% overall; 3.6% among MSM; incr. 80% from 1998)

12. Table 1. Asian and Pacific Islanders (API) among People Living with AIDS (PLWA), Selected States, 1999

13. Table 2. Male Adult/Adolescent AIDS Cases by Exposure Category, API and US, through 12/00 (CDC, 2001)

14. Table 3. Female Adult/ Adolescent AIDS Cases by Exposure Category, API and U.S., thru 12/00 (CDC 2001)

15. Table 4. AIDS Cases by Sex, Age at Diagnosis, and Race/Ethnicity: U.S. and API (CDC, 2001)

16. HIV/AIDS Data: API Americansand South Asian Americans • 21% unknown exposure among API women (compare to 16% for all U.S. women) • 14% exposure by blood transfusion among API women (compared to 3% all U.S. women, 2% API men) • Age at diagnosis comparable to U.S. population: concentrated between age 25 and 44

17. Misc. Data on South Asian Americans and AIDS • 1998: Of 275 known APIA AIDS cases, 5% South Asian (U.S.) (Wortley, et al, 1999) • 1996: 1.5% of API MSM AIDS cases were South Asians (22 of 1,429) (California, DHS, 1998) • Of 165 Asian Indian teens surveyed in Long Island, most knew about unsafe sex, lacked other HIV knowledge (Bhattacharya, 2000)

18. Table 5. HIV/AIDS in South Asia, 1999, 2000, Selected Sites(UNAIDS/WHO)

19. Sociological /Research Questions • What can studies of South Asia tell us about South Asian Americans? • What can data on Asian Pacific Islander Americans tell us about South Asian Americans?

20. Cultural Traditions: Resource or Barrier? • Diversities • Nation of birth (South Asian, other Asian, African, European, American continents) • Religion • Region of origin and language heritage • Immigration and acculturation • Socio-economic-educational status and caste • Age, marital and family status • Gender/ gender identity

21. Cultural Traditions • Hierarchies and role definitions • Family and community • “Who you are defines what you do” • What you do affects your community • Individuation and self-actualization?

22. Cultural Traditions • Taboos on Discussing • Illness, death • Sex, sexuality, sexual pleasure

23. Traditional Cultural Tendencies • Marriage as Duty • Sex for Procreation • Women’s Deference

24. RECOMMENDATIONS: DATA • Collect and report disaggregated data • CDC, HRSA, Census, all public health agencies • By ethnicity, primary language, nation of birth, nation of family origin • Use standard definitions for race, ethnicity, national origin

25. RECOMMENDATIONS: DATA • Over-sample South Asians where concentrated • Test and implement culturally acceptable and valid methods • To assess how beliefs bear on behaviors • Focus groups, language-specific groups (Georgia, Toronto) • Community leaders, community groups • In-home venues (MAAAP)

26. RECOMMENDATIONS: EDUCATIONAL PREVENTION AND OUTREACH • Ecological models include family & community • “AIDS” issue belongs to “our” community • Promote help-seeking behavior • Social influence techniques • Focus Groups • Culturally specific, congruent messages and methods • Dance presentation, television, newspaper • Videos, public health promotion messages • Age specific and Intergenerational

27. RECOMMENDATIONS: COMMUNITY INVOLVEMENT & RESOURCES • South Asian organizations become informed • Mainstream HIV &GLBTQ organizations become culturally competent/ accessible • National, state, local boards membership must represent diversity of community • Involve HIV-affected individuals in planning and implementing programs • Dedicate adequate resources to all recommendations

28. RECOMMENDATIONS: COMMUNITY INVOLVEMENT and RESOURCES • Agencies and individuals share knowledge, experience, resources • Directories, South Asian language materials, translators/ interpreters, research findings, speakers • Expand use of internet • Exchange indirectly related resources (immigration, health insurance, education) • Support development of networks • Increase U.S. awareness and concern for epidemic in South Asia

29. CONCLUSIONS: A • Stigma and complacency • .. delay the development of prevention efforts • .. impair data collection and research • .. inhibit testing and treatment • .. deprive individuals and families of support needed.

30. CONCLUSIONS: B • Awareness, community pride and family traditions • .. reduce risk taking • .. stimulate testing • .. promote research, prevention efforts • .. increase treatment access and use • .. improve health outcomes • .. support compassion