The Forgotten Minority
Asians and Pacific-Islanders in New York Battling HIV/AIDS
AIDS does not discriminate but people do. For Asian and Pacific-Islander Americans, discrimination exists both from within and from outside the community. This means that many community-based organizations must pull double duty educating non-Asians about Asian culture and informing Asians that they are at risk of HIV/AIDS.
Names and Numbers
The 2000 Census reports that 10.9% (or 872,777) of New York City's population identifies as Asian or Asian in combination with one other race. The Asian population has increased faster than the total population of New York City since 1990, ranking New York City as having the largest Asian population in the United States. According to the New York City Department of Health (NYCDOH), of the 6,364 newly diagnosed cases in 2001, 2% of those were among Asian and Pacific Islanders (API). APIs account for under 1% (or 785) of the 96,437 diagnosed cases in NYC since the beginning of surveillance in 1982 through 2001.
In response to these numbers, the NYCDOH has allocated funds specifically to communities of color. In a statement from Dr. Marjorie Hill, Assistant Commissioner of the Bureau of HIV/AIDS, $17 million of the HIV prevention budget consists of contracts with community-based organizations (CBOs), and 90% of those CBO resources target people of color. However, only 3%, or $510,000 of the $17 million, is allocated to services for APIs.
As with all statistics one must ask whether these figures are accurate and how they are being interpreted. These are especially vital questions when discussing a lesser understood demographic such as Asian-Americans. "It's been very difficult to not only have to teach the community AIDS work but to have to teach funders and the health departments at the city, state and federal level about Asian history," says Suki Terada Ports, founder and executive director of the Family Health Project, co-founder of the Asian-Pacific Islander Coalition for HIV/AIDS APICHA), and co-founder of the National Minority Task Force on AIDS.
For example, many discrepancies can go unnoticed by government agencies that are looking at numbers showing cause of infection for APIs as unknown or from blood transfusion. According to Ports, if government agencies had a better understanding of APIs they would know that these two causes of infection are, "the easiest way to avoid having discussions on sex or drugs. The other part is with Asians, if you're a non-Asian doctor talking to me in English and I have absolutely no idea what you're talking about, I'm just going to smile and say yes." She adds, "Listing 'unknown' isn't crazy, it's a no-brainer and yet they are looking for a scientific answer. They are not thinking about the fact that this is a cultural answer, it's not a scientific answer."
Cultural sensitivity is an issue that is all too often overlooked when responding or attending to the API community. An initial flaw is in the term "Asian," which has been debated and agreed to be too broad because it encompasses thousands of cultures and sub-cultures. To add insult to misclassification, the API community, along with over 500 tribes of Native Americans, are often grouped into the "other" category by government agencies.
Diversity Among Asian Americans
According to Simon Ho, program specialist at the Chinese-American Planning Council (CPC), sometimes numbers can lie, blurring parts of the equation. "They don't consider that the Asian community is so diverse and that every culture is different. It's diverse to the extent that everything is factored in from the location you come from, what kind of language you speak, and your education level. Even if you are highly educated you can be so traditionally stubborn that you would not talk to people about HIV/AIDS," he said. "The government agencies do not realize that its not just behavioral change, you have to change the whole mentality of Asians and understand how they approach the health system, health beliefs and sexual beliefs. For 5,000-some years we have been thinking like that and you want to change that in a couple of years -- that's just ridiculous." The CPC has seen a sharp increase in caseload for their client services, which started with two clients at its inception five years ago, grew to 15 in 1999, and now serves 50 -- with four new cases in the first three months of 2003. Not having sufficient funds to hire more case managers, all 50 people are handled by two case managers, who must often spend hours taking clients to the doctor and translating.
"Most Americans, non-Asian-Americans, do not get Asian history in school so they don't know the history behind any of the countries. Plus they don't know the difference. 'See one Asian, know them all.' But as I always relate, American stomachs are smarter than their heads because they know if they want Chinese food they'll got to Chinatown, if they want kimchi they will go to a Korean restaurant, or they want raw fish they will go to a Japanese restaurant. Their stomachs know there's a difference, but nothing else knows," Ports said.
Such oversights can shortchange funding to API groups. For example, the same $20,000 allotted a Hispanic group to print a bilingual brochure would not be sufficient for an API group that needs to provide outreach in at least seven major Asian languages and dialects. Historical and cultural differences should also be taken into account. According to Ports, one would not send her, a Japanese woman, to do outreach to an older group of Filipinas. Many older generations still remember the conflicts of the past, so if an uninformed government agency approached outreach in that way it would be ineffective.
"You have to have enough numbers. Everything is outcomes and numbers to justify what you're asking for from a grant," said Bric Bernas, project manager at APICHA. Epidemiological studies that are not culturally informed may not be producing an accurate picture of infection rates. This can hobble organizations vying for funding from agencies looking for tangible statistics that show a need for their monies. Some organizations have had to form alliances with other groups to collectively create a more formidable force when requesting grants.
James Tai, senior development associate for HIV/AIDS services at the CPC, said, "funders want to use their money in a wise sense, and because of that they are going to fund something with tangibles that are a little more concrete, where you could really see that there are successes being made." Thus, culturally appropriate and sensitive outreach is vital to identifying and addressing high-risk groups.
In recent years, API groups have stressed in their outreach that APIs must take responsibility for themselves through increased HIV/AIDS education and health awareness. Ho said that in CPC outreach efforts, many APIs are "still afraid to come forward even to ask a simple question. When they see a program flyer or pamphlet on HIV/AIDS services or DOH services they immediately turn away and say, 'I do not need to be tested. I'm not involved in those things.'"
Linda Deng, HIV/AIDS outreach worker at Saint Vincent's Immigrant Program, said, "the first thing that is very important is to accept that HIV/AIDS is a problem in the community. APIs should get more information about HIV/AIDS prevention and education. They should go get HIV testing and know that the population is also at risk."
The reluctance to recognize the disease within the community exists on all levels. A major concern for outreach workers is Asian doctors who are reluctant to speak openly about the disease with their patients. APICHA, CPC and Saint Vincent's have all had difficulty dealing with many Asian doctors in their outreach efforts, down to the issue of just leaving pamphlets in doctors' offices. There is a general fear that being open about HIV/AIDS would cause doctors to offend or lose patients. Ho learned at a CPC outreach workshop that many APIs assume that getting a blood test means they are being screened for HIV -- that is, if they consider HIV a risk at all. Deng has received calls on Saint Vincent's hotline from API professionals working in labs or hospitals who have many questions and concerns about handling blood and working with HIV positive patients. She believes that although people have a general knowledge of the disease, few understand the specifics about transmission.
That stigma, similar to the early years of the epidemic, is prevalent throughout the API community with many still believing that HIV/AIDS is only contracted by homosexuals, drug users, and those leading a "promiscuous" lifestyle. Others are just unwilling to talk openly about the disease. So unwilling, in fact, that Saint Vincent's has little to no attendance at their API support groups. The Immigrant Program even went as far as opening an API unit in Chelsea because API clients felt uncomfortable going to the regular clinic where there were HIV-positive clients.
However, Ports does not believe that this is apathy, "I think in the Asian community apathy almost doesn't exist. Apathy is a word that really rarely applies to Asians. You can be totally concerned about something and pull the shade down and have your face remain totally blank, but it's not apathy. It's either scared or worried or concerned or a lot of things. It's the old thing about bringing shame to the family, you don't bring dirty linen home."
According to Deng, another issue common among APIs is that "they often find a primary care provider when they are already very sick. It's very hard to do surveillance because a lot of people don't get tested so we don't know their real status." She said a lot of APIs take medication only when they feel sick. This poses a problem because they don't realize that "with HIV/AIDS you have to take medication forever."
Bernas added that "the first generation is usually very reluctant. If you're a first- or second-generation immigrant, there are some hesitations in terms of accepting information or a condom. They think that they are not susceptible to getting HIV. We have this issue of being a model minority, that we are supposed to be perfect, not supposed to be making mistakes." APICHA attempts to contradict the stereotype by presenting hard statistics in their outreach as proof that the community is at risk.
"One of the things we found about Asians is that they simply do not believe there could be a chain reaction. People think, 'I only have one boyfriend, I only have one partner.' They would not think about whether their partner has any STDs, has other partners, or is visiting sex workers. Even if they suspect it they are not going to think about it," said Ho.
Those at Highest Risk
APICHA identifies the three high-risk groups in the API community to be men who have sex with men (MSM), immigrants and sex workers. While surveillance reports from the CDC indicate that transmission is highest among MSM, immigrants and sex workers are also considered high-risk, and prove to be the hardest to contact for outreach and surveillance.
A 1999 report by the DOH found that among APIs living with AIDS, 65% are known immigrants. In contrast, among African Americans and Latinos living with AIDS, 10% and 14% respectively are known immigrants. A common fear, especially among undocumented immigrants, is that if they are tested, diagnosed or even participate in an HIV/AIDS-related discussion they will be reported to the Immigration and Naturalization Service (INS). Deng said, "people do not want to talk too much because they are thinking about being undocumented. They have a lot of worries that if they go to the clinic someone would report them to the INS, so they are not very open." Current INS regulations stipulate that persons found to have a communicable disease of public health significance, which includes HIV infection, are rendered inadmissible, although waivers may be attained on a case-by-case basis.
Even with such regulations, many illegal immigrants are smuggled into the United States having contracted the disease abroad while waiting to enter the country. "It is a long trip. They come through another country, they stay there for several months, they visit local prostitutes, that's probably how they got it," said Deng.
Some APIs may have contracted the disease in their country of origin where HIV/AIDS is widespread. Tai says, "those numbers are pretty scary. You have to consider that there is a lot of inter-migration. You're definitely going to get affected by this epidemic one way or the other."
Fear of association with the disease also runs among sex workers. High-risk behavior ensues because sex workers are afraid of losing customers by making them feel uneasy when asked to wear a condom. In response, the CPC has done outreach to persuade those in the sex industry to use condoms. Ho says that a particular logic needs to be used in order to work within this demographic such as telling those in the sex trade that even if they make an extra $30 without a condom, their workers can contract any number of STDs that could render them unable to work.
For API men who have sex with men, there are still many who do not openly identify as gay for fear of rejection from their families and community. This fact makes HIV/AIDS an even more closeted topic, and a dangerous reality considering that 417 out of 785 APIs diagnosed with AIDS from 1985-2001 were through MSM transmission.
APIs Helping APIs
Organizations that specifically address HIV/AIDS in the API community have responded by taking a different, more culturally sensitive approach to outreach. In so doing, these groups can reconcile cultural differences and sensibilities with the need to address a sensitive issue.
When speaking to clients, Deng often finds that directly associating a client with the disease can make them less willing to speak openly. Instead she indirectly refers to the client by relating stories about somebody else or a friend to get a point across. For outreach, Saint Vincent's Immigrant Program has also asked reporters to publish stories about their agency in various API newspapers, which has led to calls from APIs for information. "I think it's because when you read the newspaper no one notices you. They really want to know the information but can't find a way to get it," said Deng.
APICHA uses public service announcements as a means of outreach. The organization launched a subway campaign. "We translated the ad into different languages and tailored them more toward talking about you, yourself, an API person within that community. For example, 'I am Korean. I don't get HIV. Think again. Go get tested.' We translated that in Korean and we published it in Korean newspapers that are widely circulated in the community. We got a good response from that," as well as from other highly circulated API publications, said Bernas. He says that using an API face to deliver a message to APIs in an API language has made the campaign a success.
APICHA also hopes to run PSAs in HX, a gay magazine, to reach the part of the community currently the hardest hit by the disease. "We have tested 600 clients since we started in May 2001. At this time we believe that nine tested positive. Eight of them were identified as MSM," said Bernas.
In addition to PSAs, both Saint Vincent's and APICHA offer a multi-lingual hotline and counseling. APICHA's hotline offers seven languages: Urdu, Bengali, Hindi, Korean, Japanese, Tagalog, Cantonese and Mandarin. Both agencies also provide confidential, on-site testing. APICHA also provides a home-testing kit, which cannot be performed on-site and only provides instructions in English. While that can pose a problem for APIs who do not read English, the test offers complete anonymity.
A current hurdle for APICHA is getting cooperation from faith-based groups. In order to speak with them, APICHA outreach workers have modified their language for outreach. "We talk more about the wellness of the person as an API. And one of the issues is HIV awareness. That's how we go around it and are able to address the issue," said Bernas. APICHA also has outreach workers in online chat rooms, bars, clubs, bathhouses, colleges and universities, in addition to API-organized events throughout the city.
Fortunately, differences among APIs are being recognized in other parts of the city as well. In September 2002, two Asian doctors at the Zucker-Hillside Hospital started the Asian-American Family Clinic. Their practice melds Asian cultural sensibilities about health with diagnoses and treatment.
Ports says, "I think people's hopes need to be fulfilled a little better so that they can feel comfortable and know that somebody cares about what happens to them. Besides just caring, they should also speak their language."
Wherein society at large and government agencies have been irresponsible in not understanding Asian and Pacific Islanders, numerous API organizations have expressed the need for the community itself to take responsibility and address HIV/AIDS. The Asian community has had a longstanding and continual struggle against discrimination, but ironically HIV/AIDS does not discriminate.
This article was provided by Body Positive. It is a part of the publication Body Positive.