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

Linda L. Groetzinger, A.M. School of Public Health

University of Illinois at ChicagoAmerican Public Health Association

2001

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Yes, Two Problems!

1. Lack of Data

2. Attitudes about Attitudes

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WHAT WE KNOW AND DON’T KNOW

Epidemiology Risks, Knowledge, Attitudes, BehaviorHIV/AIDS in South AsiaSouth Asian Cultural StrengthsRecommendations

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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, 20003.4/100,000: Rate of New Infections, 20003,055 Known Deaths: 2,724 Males, 331 Females (12/00)

(C.D.C, 2001)

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WHAT’S WRONG WITH THIS PICTURE?

South Asian population(s) not identifiedDistribution of APIAs / South Asians differs widely by regionUndercounting, underreporting Barriers to accessScant detailed studies, diverse patternsLate access (rates of pcp, preventable and treatable: Eckholdt and Chin, 1997)

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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% IncreaseNote: Definitions Change

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South Asian Americans: How Many? (Selected Locales)

New York City, 2000 (APIA Alone)

Asian Indian: 170,899 = 80.7% IncreaseBangladeshi: 19,148 = 286% IncreasePakistani: 24,099 = 78.5% IncreaseSri Lankan: 2,033 = 150% Increase

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South Asian Americans: How Many? (Selected Locales)

Illinois, 2000Asian 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%

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

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Barriers to Access, Data Collection

Immigration regulations and perceptionsLinguistic and cultural barriersLack of understanding health care systemLack of insuranceFear/ distrust of social service institutionsFear of breach in confidentialityStigma re: health/illness/sex/drugs/help

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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)

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

1999State API %

of PopNo. PLWA

No. API PLWA

API % of PLWA

Hawaii 50.9 948 219 23.1

Calif. 10.9 45,220 1,100 2.4

New Jersey

5.7 14,678 68 .5

New York

5.5 54,971 378 .7

Illinois 3.4 9,889 71 .7

Florida 1.7 34,074 70 .2

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Table 2. Male Adult/Adolescent AIDS Cases by Exposure Category, API and US, through 12/00

(CDC, 2001)Exposure Cat. U.S APIMSM 56% 72%IDU 22% 5%MSM + IDU 8% 4%Coag. Dis. 1% 1%Heterosexual 5% 4%Blood Prods. 1% 2%Risk Unknown 8% 12%

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

(CDC 2001)Exposure U.S. APIIDU 41% 16%Coagulation Disorder

0% 1%

Heterosexual

50% 49%

Blood Products

3% 14%

Unknown/ Unspecified

16% 21%

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

Age at Dx

Males% (API)

Males% (U.S.)

Females% (API)

Female% (U.S.)

0-12 0 1 3 3

13-24 4 3 7 7

25-34 35 35 33 37

35-44 39 38 33 36

45-54 17 15 14 12

55 & Up 5 6 11 5

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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

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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)

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

Bangla-desh

India Nepal Pakistan Sri Lanka

Prevalence (national)

0.2% 1.0% 0.29% 0.6-.1% 0.07%

Number (Region: 5 million)

21,000 3.8-4 mil

30,000 70-80,000

8,500

Prev.: STI Clinics

65.0% 6.1%

Prev.: Sex Wkrs.

58% 20.0%

Prev.: IDUs 2.5% 64.0% 50.0%Prev.: Prenatal 3.0%Heterosexual Tr.

83.0%

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Sociological /Research QuestionsWhat 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?

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Cultural Traditions: Resource or Barrier?

DiversitiesNation of birth (South Asian, other Asian, African, European, American continents)ReligionRegion of origin and language heritageImmigration and acculturationSocio-economic-educational status and casteAge, marital and family status Gender/ gender identity

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Cultural Traditions Hierarchies and role definitionsFamily and community“Who you are defines what you do”What you do affects your communityIndividuation and self-actualization?

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Cultural Traditions

Taboos on Discussing

Illness, deathSex, sexuality, sexual pleasure

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Traditional Cultural TendenciesMarriage as DutySex for ProcreationWomen’s Deference

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RECOMMENDATIONS: DATA

Collect and report disaggregated data

CDC, HRSA, Census, all public health agenciesBy ethnicity, primary language, nation of birth, nation of family originUse standard definitions for race, ethnicity, national origin

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RECOMMENDATIONS: DATA

Over-sample South Asians where concentrated

Test and implement culturally acceptable and valid methods

To assess how beliefs bear on behaviorsFocus groups, language-specific groups (Georgia, Toronto)Community leaders, community groupsIn-home venues (MAAAP)

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RECOMMENDATIONS: EDUCATIONAL PREVENTION AND OUTREACH

Ecological models include family & community“AIDS” issue belongs to “our” communityPromote help-seeking behaviorSocial influence techniquesFocus GroupsCulturally specific, congruent messages and methods

Dance presentation, television, newspaperVideos, public health promotion messagesAge specific and Intergenerational

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RECOMMENDATIONS: COMMUNITY INVOLVEMENT & RESOURCES

South Asian organizations become informedMainstream HIV &GLBTQ organizations become culturally competent/ accessible National, state, local boards membership must represent diversity of communityInvolve HIV-affected individuals in planning and implementing programs Dedicate adequate resources to all recommendations

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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 internetExchange indirectly related resources (immigration, health insurance, education)Support development of networksIncrease U.S. awareness and concern for epidemic in South Asia

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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.

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CONCLUSIONS: BAwareness, community pride and family traditions

.. reduce risk taking

.. stimulate testing

.. promote research, prevention efforts

.. increase treatment access and use

.. improve health outcomes

.. support compassion