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The "Other" Epidemic: AIDS Among Asian-Americans

June 1999

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Other. The fourth category. A slot into which Asian-Americans often find themselves tossed, alongside Pacific Islanders, Native Americans, and any other groups that cannot be squeezed into the three more specific umbrella terms commonly used to describe the ethnicities of American citizens: Latino, African-American, and White/Caucasian.

The lumping together of so many diverse cultures as "Other" throughout official statistical collection in this country illustrates the breadth of ignorance that prevails in the United States regarding Asian history, Asian cultures, and Asian-American realities.

This ignorance has generated a decades-old myth of Asians as a "model minority" within the American population. Although much intellectual discussion has begun to challenge that myth, Asians and Asian cultures are still viewed by mainstream America as passive, polite, intelligent, hard-working -- and as incapable of doing poorly in school, incapable of shooting drugs, and, significantly, incapable of contracting HIV.

AIDS Issues in Asian Communities

Yet one percent of all officially reported AIDS cases in this country are located in Asian and Pacific Islander -- or API, in shorthand -- populations. And those are just the official numbers. C.N. Le, the Director of Education at APICHA, New York's Asian & Pacific Islander Coalition on HIV/AIDS, estimates that HIV prevalence rates in some parts of the city are at least twice as high.

"When I talk to people outside the [HIV/AIDS] field," Le notes, "they almost always ask me, 'Is AIDS a really big problem in the Asian community?' And what I tell them is that the statistics say 'no.' The statistics say that the prevalence rate among Asians is relatively small, and much smaller than among the black community or the Latino community.... But those are official statistics, and official statistics are notorious for undercounting minorities, and especially for undercounting immigrants."

Indeed, confronting the issue of HIV/AIDS among the Asian and Pacific Islander populations in New York means confronting a complex web of challenges, stretching from immigration to identity to language to culture.

Long-time minority and women's health advocate Suki Terada Ports is the founder and Executive Director of the Family Health Project and one of the founders of the National Minority Task Force on AIDS. She calls the HIV/AIDS situation among Asians and Pacific Islanders a "circular, never-ending spiral of overlapping problems."

Ports explains: "By virtue of where they live, APIs in New York City are not getting the prevention information that they need at the rate that they should be getting it. The information should be very language-specific and culture-specific. But consider that New York City hired its first Chinese employee at the Department of Health in 1987 or 1988. And he was not born in the U.S. He knew nothing about the city or populations here. He was born in mainland China and had very limited English, so he was not particularly helpful to the API communities in New York.

"It's like bringing someone from another continent to deal with white people," Ports continues, "say, from a country like Norway -- and assuming that because the [skin] color is the same, the knowledge would be the same. Yet it's totally different."

With sixty different API ethnic groups in the city, speaking at least a hundred different languages, and with a structure of public indifference and official ignorance about them, it is not surprising that the HIV prevention message is getting lost.

Trends and Services

Katherine Wong is a Certified Social Worker and the Director of the HIV/AIDS Program at the Chinese-American Planning Council. She echoes her colleagues' fears about a growing trend of HIV infection among API immigrant populations in New York City. "Look at the trends of HIV infection from ten years ago compared to now," she says. "Look at our clients and what they're facing, and you can see why we need to pay attention to AIDS in this community."

On any single day, the Planning Council's Manhattan office is engulfed in a crowd of Chinese immigrants seeking the help of the CPC to obtain public entitlements and other services. "The population that we're serving is made up of immigrant, monolingual Chinese individuals and their families, many of whom are undocumented," explains Wong. Often CPC clients have been in New York for many years, but have lived in an entirely Chinese environment. "Our bilingual counselors help the clients apply for Medicaid, Food Stamps, and other types of entitlements."

Throughout the AIDS epidemic, it has been shown time and again that the people who lack such basic necessities as food, healthcare, and housing are those most vulnerable to HIV infection. Thus the situation within the Chinese community -- and other immigrant API populations in New York -- has created conditions that are ripe for an explosion of HIV/AIDS.

"In the CPC's AIDS Program, we first provide outreach and education services," Wong explains. "In the Asian community -- and particularly in the immigrant Asian community -- AIDS and HIV is still a very 'under-the-covers' kind of issue, and is still stigmatized as a 'gay' issue -- something that doesn't happen in the Asian community. It happens to a white gay male -- not to a woman, and especially not to a housewife who has children. That's the last person that people have in mind as someone who can get infected with HIV."

Where the Money Is

Of course, these attitudes are not unique to the Asian community. But, while skyrocketing HIV infection rates have pushed African-American and Latino communities to demand culturally appropriate education, Asian-Americans have yet to secure significant public funding or attention to address the spread of HIV in their communities.

"It's a complicated dynamic when you're talking about priorities for funding of HIV/AIDS programs," according to APICHA's Le. "The stats are hard to ignore when you see that in certain urban areas, thirty to forty percent of the population is infected with HIV. For that reason, a lot of attention is being paid to the black community and the Latino community, and it should be.

"Yet AIDS service organizations serving people of color have to avoid a tendency to fight amongst ourselves when we should be working together," he continues. "APICHA is trying to strike a balance between forging strong coalitions with other organizations of people of color and advocating, within these coalitions, that we should not forget the Asian community."

Ports localizes the point: "It's a problematic issue ... because in New York City there are as many cases of APIs with AIDS as there are all AIDS cases in seven individual other states! Now, we wouldn't tell those states, 'Close your AIDS departments, because compared with California, New York, Texas and Florida, your cases are so low that you can just shut your doors. We can't divert limited money to your state.' Yet that's virtually what's happening with Native American and API populations in New York, even though the numbers in New York City might be higher than the entire AIDS caseload of another state."

Some progress has been made toward the greater inclusion of API populations in government programs and funding. Wong of the CPC participates in the regular meetings of the Advisory Board to the Department of Health's Cross-Cultural Affairs Office. In addition, the CPC recently made four educational Cantonese-language videos with funding from the Centers for Disease Control. The videos have met with great success, and the CPC plans to do a Mandarin voice-over to make the skits more widely available within the Chinese community.

"The video skits place HIV/AIDS in a cultural context," Wong explains. "So it's not just a blanket message we're putting out there. It's not just about safer sex. We all know that there's so much more than safer sex that's connected to HIV/AIDS and prevention. We need to go into issues of family, values, attitudes ... and we need to encourage people to examine themselves and their perceptions of people with HIV. That way we can start to change those attitudes."

The four different videos are geared toward men who have sex with men and to women, youth, and the general population, and CPC staff show the videos in community workshops. One such venue is the DOH mobile van, which has established a successful partnership for the CPC.

Community and Advocacy

Ports agrees that public institutions have begun to recognize that only community groups are qualified to do genuine cultural translation of the HIV prevention and AIDS support messages. Yet the funding is still very limited.

"One of the issues is the 'squeaky wheel,'" she explains. "African-Americans got together, got organized, went to Congress, and got funds. The Asians on the East Coast have absolutely no political representation and no political clout. The APIs here depend on the Congresspeople from the West Coast, who are very generous in responding to needs -- but they simply can't respond to our needs in the same way that they respond to their own constituencies."

API communities have trouble organizing themselves into a 'squeaky wheel' because of the history of Asian populations in this country. Few Americans realize that until very recently Asians have been singled out for discriminatory treatment under immigration laws like the Chinese Exclusion Act and the Gentlemen's Agreement -- not to mention the incarceration of the 120,000 Japanese in the United States during World War II. That experience created a political vacuum.

"When people came out of the camps," says Ports, "they were told, 'Don't organize. Don't live together in small communities where you can get picked up again.... So, disperse!' "

She goes on: "Now, although small communities of Japanese and Chinese exist on the West Coast, you find only much older Chinese communities on the East Coast. Since immigration laws were changed in the 1960s, Koreans and Indians have come in greater numbers, and you have a few communities in Queens, Brooklyn, the Bronx ... but you not only don't have the numbers of Asians that you have on the West Coast -- you don't have the sense of unification that you have among Asians on the West Coast."

Without a sense of community or any ethnic cohesion, and with such low numbers of HIV/AIDS cases appearing among the API populations, the ability of the API community in New York to get funding for HIV/AIDS programs -- or to attract the time and attention of mainstream AIDS service organizations to the API cause -- is extremely limited.

Differences, and Similarities

The small amount of funding that has been directed to API-focused programs and organizations must be divided among the many different linguistic and cultural groups that fall under the API heading -- all of the "Others."

"The assumption is that it's pretty simple," says Ports. "Mainstream America thinks you can do an 'API AIDS 101' information session and couple it with a condom distribution program, not understanding the many ... problems and [geographical] border disputes and ethnic differences that exist among the various API countries and their peoples."

If program planners are insensitive to these cultural differences, they will certainly compromise the success of HIV-related initiatives by offending the traditions of the participants in the program.

For instance, although many Koreans speak Japanese, the history of relationships between the Japanese and Korean peoples in Asia makes it unlikely that Koreans would listen or respond to an AIDS message coming from a Japanese educator. Similarly, although many Bangladeshis speak the Pakistani language, Urdu, the histories of those countries would render a Pakistani AIDS educator very ineffective among a Bangladeshi audience.

"Yet," comments Ports, "although all of the countries are very different, there are similarities that must also be heeded. For instance, [among the vast number of API cultures] there is a common lack of discussion of private matters between genders and between generations.... Discussion of private matters is also not taken outside of the family. And, remember, [the control of] the virus depends upon seeking help -- emotionally and medically."

Providing Services

Recognizing this challenge, both the CPC and APICHA follow up their outreach efforts with case management services. APICHA, as the only pan-Asian organization in New York, provides translation and interpretation services for 75 clients of various ethnicities. Meanwhile, at the CPC, twelve male clients are currently managed by one bilingual counselor. In both agencies, counselors accompany clients to medical appointments, help them navigate the social service and public health systems, and provide them with an ongoing source of support.

"Just recently we were able to hold our first support group at the CPC," notes Wong. "We were really pleased to see how much sharing and mutual support took place in the support group, but it took many, many months for us to convince [the clients] to meet each other.

"We, as professionals, 'know' that groups are helpful," she continues. "It's different when you have HIV and nobody knows. The fear of stigmatization is still very strong -- you're even afraid to come to this agency because there are other Chinese people here that might see you as someone who has HIV."

CPC clients do, however, take advantage of case management services individually. The CPC counselor is often the only person to know about a client's infection, and she is a critical link in directing clients to AIDS-related services.

The most popular clinic among CPC's clients is the AIDS Center at St. Vincent's Hospital and Medical Center, which provides uniquely appropriate services to its clients. In many other clinical settings, mainstream medical specialists are often ignorant about the cultures of their API clients. Conversely, in culturally specific settings, medical providers of Chinese or other API descent are often ignorant of the realities of HIV/AIDS in API communities. The AIDS Center's Immigrant Program offers free services to undocumented immigrants of all nationalities, and includes a subdivision devoted to API patients.

Dr. Peter Tsang, Medical Director of the Immigrant Program, estimates that for every API AIDS case he sees, another 100 cases go undetected. "It's like the 'iceberg' image we had of the epidemic back in 1983," he comments, referring to the early illustration of the AIDS epidemic that suggested that each detected AIDS case represented only the tip of an iceberg of undetected HIV infections.

"Many APIs don't go to proper medical facilities," Dr. Tsang explains, "and they don't know the symptoms of AIDS. So the cases in St. Vincent's are people who come into the hospital with end-stage AIDS -- not newly diagnosed HIV infection. It's especially serious among the new immigrants, because there is no education in their homelands. For instance, there is no public health education in rural China."

Ironically, clinical care is the least part of the services that the program offers to its clients. According to Dr. Tsang, New York State funds the clinic to do education and outreach and social case management. The Center also has Ryan White Title II funding for its outreach efforts. While this setup means that clients benefit from a variety of services housed in one clinic, the reality is that much more work still must be done.


Of 3,000 total clients in the Immigrant Program, 600 are of API origin. Of those 600 patients, fifty are of Chinese descent. Eighty percent of the clients are male, and Dr. Tsang estimates that the majority contracted the virus from commercial sex workers. He is especially concerned about the spread of HIV among the women kept as virtual slaves within this sex industry.

"Commercial sex work is swept under the carpet by API community leaders," said Dr. Tsang. "Women are scattered throughout Brooklyn and Queens in houses of ten to twelve women who are kept as sex slaves and denied access to medical services or any other type of help. Only when they are of no more use to the house proprietor are the women allowed out.

"It's very difficult to reach these populations," he acknowledges, "but if all five or six [API-focused] agencies combined their efforts and worked within their means, it might be possible."

Dr. Tsang's concern is with these sex workers' future. "There is strength in unity," he concludes, "and as of now we are only scratching the surface of this epidemic."

Ms. Wong noted that the CPC is struggling to identify Chinese sex houses and to make contact with the women working within them. The first step is networking among the house proprietors, who literally hold the key to a successful intervention. Difficult though the work has been, Wong states that many women have been able to use the CPC's case management and escort services to obtain testing and counseling.

"It's during those snippets of time that we're able to try to provide the women with some emotional support, counsel them, and tell them about risk behaviors," Wong says. "But we also use the time to try to understand where they're coming from in order to learn more about them, too."

Lessons from the "Other"

That service providers need to learn about their population of interest is a basic tenet of public health and social work, and yet it is the piece of the puzzle that is most often lost at the institutional or population level.

Suki Terada Ports offers a new way for Americans to think about the differences in API communities, and a new manner in which to approach the "Other."

"Everybody goes to eat Chinese fast food," she says. "Everybody eats Japanese sushi, and more and more people are eating Indian curries. The latest trend is Belgian French fries. People's stomachs learn very fast the differences between cultures -- but they just don't translate those differences from their stomachs to their heads!"

Unfortunately, food is too easy. Human nature seems to dictate that we forget the easy lessons; we remember only the painful ones.

AIDS is a painful lesson. And if all Americans don't start to pay attention to the spread of HIV/AIDS in each of our country's unique cultural communities -- as well as to the epidemic's spread beyond our borders -- then HIV promises to ravage America for years to come.

Rachel Sacks is Co-Director of Community Outreach and Education at Body Positive, Inc.

Back to the June 1999 Issue of Body Positive Magazine.

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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This article was provided by Body Positive. It is a part of the publication Body Positive.
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