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
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.
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
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)
Research Team/Contributors
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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)
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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.
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.
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.
Methods

Qualitative in-depth interviews
– 35 interviews
– Digitally recorded, translated,
transcribed

Quantitative survey
– In partnership with Columbia/CHAIN
– 89 participants
Characteristics of Participants in Qualitative In-Depth Interviews
Variable
Primary Language
Bahasa Indonesia
Makassar
Fuzhounese
Hokkien
Tagalog
Cantonese
English
Mandarin
Fukienese
Sumatera
Japanese
Gujarati
Korean
Bengali
Sichuan
Cambodian
Chinese(unspecified)
N
%
1
1
2
1
1
5
6
2
5
1
3
1
1
2
1
1
1
3
3
6
3
3
14
17
6
14
3
9
3
3
6
3
3
3
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

Evidence of Late Testing

36% of API participants had selfreported 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)
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
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)
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 APIfocused agency or a result of
concentration of language services
where APIs tend to go

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.
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
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
Shared Language and Ethnicity

For some, “Asian” was equated with:
– Lack of gay sensitivity
– Discriminatory attitudes about HIVpositive people
– Lack of HIV expertise
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.”

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
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
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.”
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)
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
HIV knowledge: treatment and
prevention

Varying levels of knowledge
– Few had very good grasp
– Some knew practically nothing
– English fluent seemed more
knowledgeable
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.

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.”
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.
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.

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.
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.
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
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.
Recommendations
Evidence of late entry into care:

–
CONTINUE TO SUPPORT SEAMLESS
REFERRAL FROM HIV DIAGNOSIS
INTO HIV MEDICAL CARE.
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.
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.
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.
Recommendations

Low levels of HIV knowledge:
– DEVELOP NEW VENUES FOR
PROVIDING PREVENTION EDUCATION
TO NEW IMMIGRANTS
• Immigrant community organizations
• Work places
Recommendations
Disparities in mental health:

–
IMPROVE ACCESS TO MENTAL
HEALTH SERVICES FOR APIs
Recommendations
High levels of stigma and isolation:

–
DEVELOP CLIENT “EMPOWERMENT”
WORKSHOPS AND TRAININGS
TARGETED SPECIFICALLY TO APIs.
Recommendations
High levels of stigma and isolation:

–
SUPPORT MEDIA ADVERTISING IN
API LANGUAGES TO ENCOURAGE
EARLY TESTING AND REDUCE HIV
STIGMA.
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.