John J. Chin, Ph.D. Associate Professor Department of Urban Affairs and Planning

1. Looking for a Place to Call Home:A Needs Assessment of Asians and Pacific Islanders Living with HIV/AIDS in the New York Metropolitan Area John J. Chin, Ph.D. Associate Professor Department of Urban Affairs and Planning Hunter College, City University of New York

2. This research was made possible by grant number 2 H89 HA 00015-14-00 from the U.S. Health Resources and Services Administration (HRSA) HIV/AIDS Bureau, with the support of the HIV Health and Human Services Planning Council, through the New York City Department of Health & Mental Hygiene and Medical and Health Research Association of New York City, Inc. Its contents are solely the responsibility of the Researchers and do not necessarily represent the official views of the U.S. Health Resources and Services Administration, the City of New York, or Medical and Health Research Association of New York.

3. Research Team/Contributors Research Team • John J. Chin, PhD, Principal Investigator • David Abramson, PhD (Columbia University) • Angela Aidala, PhD (Columbia University) • Nick Bartlett, MIA • Elana Behar, MS • Sara Berk, MPH (Columbia University) • Yu-Kang Chen, MA (APICHA) • James Egan, MPH • Ezer Kang, PhD (New York Presbyterian Hospital) • Andrea King, MPH (Columbia University) • Jeannine Melly, MPH • Tasha Stehling, MPH (Columbia University) • Nicole Tsang • Linda Weiss, PhD

4. Research Team/Contributors Community Partners • Asian & Pacific Islander Coalition on HIV/AIDS, Inc. (APICHA) • Chinese American Planning Council, HIV/AIDS Services (CPC) Interviewers and Interpreters • Kitseng Chao • Wei Chen • Shefali Rowshan, MSC • Noreen Daniel • Mariko Hashimoto, MSW • Michie Sato Special thanks to: • George Ayala, PsyD (GMHC) • Bijeng Chen (APICHA) • Sumon Chin (Chinese American Planning Council, HIV/AIDS Services) • Mandy Choy (Chinese American Planning Council, HIV/AIDS Services) • Ruth Finkelstein, ScD (NYAM) • Kevin Huang-Cruz, MS (APICHA) • Yumiko Fukuda, MSW (APICHA) • Laura Horwitz, MSoCSc (GMHC)

5. Research Team/Contributors • Kazuko Ko (APICHA) • Gaetana Manuele, CSW (GMHC) • Julia Maslak (NYSDOH) • Grace Moon, MHA (NYCDOHMH) • Jan Carl Park, MA (NYCDOHMH) • Ellen Weiss Wiewel, MHS (NYCDOHMH) • Shu-Hui Wu (APICHA) • Genevieve Aidala (data entry) • Chieh-I Chen (translation and transcription) • Le Li (translation and transcription) • Samantha Mang (translation and transcription) • The Last Word (transcription) We would especially like to thank all of the study participants, who so generously shared their time and their stories.

6. Background on API Population • In the US, the Asian & Pacific Islander (API) population continues to increase rapidly. • The API population in NYC grew by 71% between 1990 and 2000. • 78% of the API population in NYC is foreign born.

7. APIs and HIV in the US • While HIV/AIDS prevalence among APIs in the US remains relatively low, there are signs of rapid increase. • Between 2001 and 2004, APIs had the only statistically significant estimated annual percentage increases in HIV/AIDS diagnosis rates in the US. • In the same period, NYCDOH reported that in NYC “the number of new HIV diagnoses each year has declined in all racial/ethnic groups except Asian/Pacific Islander.” Chin JJ, Leung M, Sheth L, Rodriguez TR. Let's Not Ignore a Growing HIV Problem for Asians and Pacific Islanders in the U.S. (2007). Journal of Urban Health. 84(5):642-7.

8. Methods • Qualitative in-depth interviews • 35 interviews • Digitally recorded, translated, transcribed • Quantitative survey • In partnership with Columbia/CHAIN • 89 participants

9. Characteristics of Participants in Qualitative In-Depth Interviews

10. Overview of Findings • Disparities in access to care, barriers to care • Disparities in mental health issues • Roots of problems appear highly related to the experience of being an immigrant – facing legal, language and cultural barriers

11. Evidence of Late Testing • 36% of API participants had self-reported major medical problems when first receiving HIV medical care, compared to 21% for the CHAIN cohort (a representative sample of New Yorkers living with HIV/AIDS)

12. Barriers to Care • 52% of API participants reported at least one logistical barrier to care, compared to 12% for CHAIN participants • 31% of API participants reported at least one provider barrier to care, compared to 12% for CHAIN participants

13. Barriers to Care • LOGISTICAL BARRIERS: • More APIs reported language barriers (11%) and cost barriers (34%) compared to CHAIN participants (1% and 4%, respectively). • PROVIDER BARRIERS: • Most frequently reported provider barrier was that staff were disrespectful or insensitive (14% versus 7% for CHAIN participants)

14. Language Barriers • Language barriers surprisingly low given that more than half of the API participants in the quantitative survey preferred to receive services in languages other than English • May be a result of recruitment at API-focused agency or a result of concentration of language services where APIs tend to go

15. Language and Cultural Barriers • Many respondents spoke little or no English. • Even those who spoke English needed help in medical settings. • Comfort of shared culture: • “Yeah it is just because basically everyone’s Asian, just to, you know, kind of like feel comfortable that they know our culture a little bit more than . . . the same background I guess. . . I’m not sure, but somehow the skin color makes us comfortable I guess.

16. Shared Language and Ethnicity • With Case Managers: • Language and bond with case manager • Resources are not “deep” enough for some languages • Multiple roles of case managers and interpreters: prevention educator, treatment educator, supportive counselor

17. Shared Language and Ethnicity • With Physicians: • Most people want a doctor who speaks their language: • “Because I am Chinese and do not understand the language, they ignore me. When an English speaker meets a doctor, they can chat a little bit. But I am ignored. This kind of thing happens.” • But language is not the key concern for some: • Doctor at Bellevue • Older and more experienced physician

18. Shared Language and Ethnicity • For some, “Asian” was equated with: • Lack of gay sensitivity • Discriminatory attitudes about HIV-positive people • Lack of HIV expertise

19. Shared Language and Ethnicity • “The science language is English…It’s all this research, everything’s coming out in English. Not anything is coming out of the [other] languages.” • Asked about use of alternative therapies: “I don’t dare to. I believe in American doctors. I don’t believe in any other doctors.”

20. Adequacy of Care • Only 35% of API participants had medical care that meets “preferred practice guidelines,” compared to 74% for CHAIN participants • Providers and undocumented participants complained that ADAP was insufficient to cover general non-HIV medical care • Consistent complaints about lack of access to dental services

21. Staying in care • Impersonal doctors • Work schedules • low-wage jobs in restaurants and garment factories • financial pressures: remittances, smuggling debts • Perception of superior care in US as compared to country of origin

22. Staying in care • “First, here it’s like medications [are offered] for HIV, and you get all the cares that you can, that you needed. Like in the Philippines when you needed something and you don’t have no money, you just die in your bed without having those like . . . medication and anything for infection.”

23. Support Service Needs and Gaps • 87% of API participants exhibited a need for case management services, compared to 40% for CHAIN participants • In qualitative interviews, participants reported service gaps in rental assistance/housing, financial assistance and job training, legal services related to immigration and alternative pain management services (e.g., massage, acupuncture)

24. Support Service Needs and Gaps • Housing: Of 9 API participants in the quantitative survey showing a need for financial housing services, none of them received such services

25. HIV knowledge: treatment and prevention • Varying levels of knowledge • Few had very good grasp • Some knew practically nothing • English fluent seemed more knowledgeable

26. Stigma and Isolation • Tremendous amount of perceived stigma. Perception that Asians are more un-accepting than other groups. • Some cases show that it is possible to tell friends and family and get support. • Other experiences are very negative.

27. Stigma and isolation • Desire not to be a burden on others and make them unhappy: • “Telling one more person just means that one more person will have a hard time. I want my friends to be happy. I want everybody to be happy, so I don’t tell them.” • “I still feel I’m so stupid you know . . . . feel so sorry for my parents. . . . that’s the only way I know that you can be bad to your parents; you know, you cannot pass away before your parents.”

28. Stigma and isolation • Fear of rejection and discrimination because seen as someone who has done “bad” or “lewd” things. • Fear of rejection because of others’ fear of transmission. • “I hear people making jokes; for example, ‘don’t drink my water if you have AIDS, I’ll get it too!’” • Indian grandmother whose daughters asked her not to bathe her grandchildren.

29. Stigma and Isolation • Many people stopped socializing or going to their churches and temples. • Some respondents had told no one about their HIV status except their case manager and physician.

30. Mental health • Because of isolation, many respondents spoke of being sad, lonely or anxious. • 71% of APIs had low or very low mental health scores, compared to 50% for CHAIN participants. • Yet, most were reluctant to seek mental health services. • Respondents generally did not believe that mental health services could help them. • Those interested in trying them out had very high, unrealistic expectations.

31. Mental health • Respondents were more likely to talk about other things that made them feel better: • Listen to music by myself and cry • Spend time with friends • One-night stands, going to clubs • Yoga, meditation, aromatherapy • Staying hopeful for a cure • Many respondents spoke of having a religious practice or going to a religious institution.

32. Special Needs of Undocumented • Limited eligibility for public benefits • Separation from family • “ . . . I was thinking maybe I should go home, but if I go home, I was thinking . . . I could not get medication or whatever. If I stay here, I at least have that, yeah. . . . I just, I really miss my family. I really, really miss my family.” • Limited work options and financial pressures

33. Recommendations • Evidence of late entry into care: • CLOSE THE GAP BETWEEN HIV INFECTION AND HIV TESTING AND REDUCE MISDIAGNOSIS BY TRAINING API DOCTORS WHO ARE NOT HIV SPECIALISTS TO RECOGNIZE AND SCREEN FOR HIV.

34. Recommendations • Evidence of late entry into care: • CONTINUE TO SUPPORT SEAMLESS REFERRAL FROM HIV DIAGNOSIS INTO HIV MEDICAL CARE.

35. Recommendation • Importance of culturally competent case managers (more so than physicians) in multiple roles: • PROVIDE TRAINING TO CASE MANAGERS AND ESCORTS/INTERPRETERS TO HANDLE MULTIPLE ROLES, INCLUDING HIV PREVENTION EDUCATOR, TREATMENT COUNSELOR AND SUPPORTIVE COUNSELOR.

36. Recommendations • High levels of logistical and provider barriers reported; comfort of shared culture and language: • SUSTAIN AND IMPROVE CULTURAL SENSITIVITY AND LINGUISTIC APPROPRIATENESS OF SERVICES.

37. Recommendations • ADDRESS UNMET NEEDS, ESPECIALLY FOR UNDOCUMENTED APIs, IN THE FOLLOWING AREAS: • Medical coverage for undocumented APIs. • Dental services, especially for undocumented APIs. • Rental assistance/housing, especially for undocumented APIs who are not eligible for HASA assistance. • Financial assistance and job training. • Legal assistance with immigration issues (e.g., applying for a green card). • Alternative pain management, such as massage and acupuncture.

38. Recommendations • Low levels of HIV knowledge: • DEVELOP NEW VENUES FOR PROVIDING PREVENTION EDUCATION TO NEW IMMIGRANTS • Immigrant community organizations • Work places

39. Recommendations • Disparities in mental health: • IMPROVE ACCESS TO MENTAL HEALTH SERVICES FOR APIs

40. Recommendations • High levels of stigma and isolation: • DEVELOP CLIENT “EMPOWERMENT” WORKSHOPS AND TRAININGS TARGETED SPECIFICALLY TO APIs.

41. Recommendations • High levels of stigma and isolation: • SUPPORT MEDIA ADVERTISING IN API LANGUAGES TO ENCOURAGE EARLY TESTING AND REDUCE HIV STIGMA.

42. Recommendations • Legal challenges of being an immigrant at root of many problems reported: • ADVOCATE FOR EXPANDING OPTIONS FOR LEGALIZING IMMIGRATION STATUS ON A HUMANITARIAN BASIS THROUGH CHANGES IN POLICY AND PROCEDURE AT THE FEDERAL LEVEL.