HIV/AIDS among Asians

ReportingonHealth Editor’s Note: This is the first of three articles to be written by Rong Xiaoqing, a reporter for Sing Tao Daily in New York, with the support of the Dennis A. Hunt Fund for Health Journalism, which is administered by The California Endowment Health Journalism Fellowships. Subsequent pieces will explore the high suicide rate among Chinese-American women and elder abuse in Chinese-American communities. Translated from Chinese by Rong Xiaoqing.

New York — To many people, December 1 is just an ordinary day. Sure, it’s World AIDS Day, so they may get some fliers about the battle against the disease in their mailboxes, and they may read or watch some related news. But the daylight will soon give way to the long night, just like on any other day in the winter, and the next morning, the world will move on, the spotlight will shift, and this day and the message it carries may soon be forgotten.

But to Jianbing Chan*, a 55-year-old immigrant who came from the coastal Fujian Province of China 20 years ago, this is a day that he wishes he could erase from the calendar. On December 1, 10 years ago, Chan, sick in a hospital bed, was diagnosed with AIDS.  From then on, December 1 became a reminder of the helplessness and desperation that overcome Chan on that doomed day. But he also anticipates its arrival because it means that he has survived one more year.

But the emotional turmoil the anniversary creates for Chan is very complex. There is self-loathing for having patronized a brothel in Chinatown — that may well have been the source of the virus — when he had just been smuggled into this country. There is resentment towards his wife, who insists on separating Chan’s plates and chopsticks from those of the rest of the family and doesn’t allow him to hug their 2-year-old grandson for fear he will pass on the disease. And there is fear that more people, including his own children, who still believe he has hepatitis B, will find out what his disease really is.

“When I think about this, I feel like I am reaching the end of the world, and I cannot breathe. The only way to deal with it is to not think about it and just focus on surviving,” said Chan.

Chan’s experiences are common among Asians who are infected with HIV. The Asian community has the lowest HIV infection rate in the United States, but the increase in new infections is alarming. And in New York, Asians are the only ethnic group that has seen consistent growth in new infections in recent years.

Compared with some other communities, the AIDS/HIV issue in the Asian community is more complicated. This is a diverse community where new immigrants and native-born people and people from different subgroups often have different needs for services. Yet there are some across the board characteristics of the Asian culture that are not helpful on the HIV/AIDS issue. For example, most Asians consider sex to be a taboo topic, and believe one should stay away from doctors unless really sick. They can also be relatively quiet and not particularly good at sharing their thoughts with others. Altogether, this leaves Asian people with HIV in a double shadow caused by the virus and the bias in their own culture, and makes AIDS prevention in the community more challenging.

The numbers and beyond

According to the U.S. Centers for Disease Control and Prevention (CDC), Asians accounted for only 2 percent of the 56,000 newly diagnosed cases in 2006, the most recent year that  data  are available. And there were only 1,300 Asians among the more than 100,000 people officially recorded as living with HIV/AIDS in New York City in 2007, the smallest of all racial groups.

Because of the relatively lower prevalence rate, Asians have long been considered a safe group that is almost immune from HIV. But other numbers may not be as reassuring.

According to one CDC study, between 2001 and 2004, in the 33 states that have records, the HIV infection rate of Asian men rose 8.1 percent, while the rates for white and American Indian men were up 1.4 percent and 2.4 percent respectively. For Hispanic and African American men, the figures were down 4.7 percent and 4.4 percent respectively. During the same period, Asian women’s infection rate went up 14.3 percent, while the rate for American Indian women increased 4.8 percent and all other female ethnic groups experienced a decline.

In New York, the infection rate of Asians has jumped 48 percent since 2002, and Asians are the only racial group in the city that saw an increase in new HIV diagnoses in 2007 compared with five years earlier, according to the city’s Department of Health (DOH).

“I don’t want to sound over-alarming, but there is a real danger. We’ve seen some other communities that missed the early signs and were hit by a big epidemic later,” said John Chin, an associate professor at the Urban Affairs Department of Hunter College, who is conducting a multi-year study on the role of religious institutions in AIDS prevention in the Asian community.    

And there is a lot more the numbers do not show. In the definitions of the authorities, drug users and homosexual men are the two highest-risk populations. And CDC statistics show that while drug users are not statistically significant among Asian infections, homosexual men made up more than half of the 1,262 newly diagnosed Asian cases nationwide between 2003 and 2006.  This makes men-on-men sex the number one cause of HIV infection in the Asian community, which is also the case in the broader population.

But this doesn’t reflect the situation in some subgroups. In the Chinese community, for example, more than 80 percent of infected people are heterosexual, and among them, 60 percent contracted the virus at brothels, according to the Chinese Planning Council (CPC), the only community-based organization that provides HIV/AIDS services specifically to Chinese people. 

CPC launched its HIV/AIDS program in 1989 to provide educational services when a Chinatown restaurant suddenly lost almost all of its business over the rumor that a chef there might have died from AIDS. But the program didn’t have any HIV-positive clients until 1999, when it was hit by the first wave of referrals from hospitals.

“Between 1999 and 2000, we had a dozen infected people come to us. We were suddenly overwhelmed,” said Sumon Chin, the director of the program.

It was not a coincidence that this was at the same time when there was a high tide of smuggling that brought hundreds of thousands Chinese to this country. Chin said all the clients she got then were young and middle-aged men who had to take a zigzag route through many different countries before they eventually landed in the United States.  On the way and after arrival, they’d try out some brothels.

“Prostitution was still under control in China at that time, and many of these men hadn’t seen an open brothel until they left their home country. It was both the curiosity and loneliness that brought them there, but neither the prostitutes nor the patrons paid enough attention to hygiene issues,” said Chin.

Nowadays, both sex workers in Chinatown and their patrons are a little bit more sophisticated, and condoms are more popular. But Chin and her colleagues are not totally relaxed.  “One of the challenges we are facing compared to service programs in the mainstream community is that our prevention campaign has to start from scratch every couple of years,” said Chin. “There always are new immigrants coming in, which means new patrons and inexperienced sex workers who are willing to take the risk.”

A myth and its aftermath

But for many people, including Asians themselves, Asians and AIDS still sound like two subjects that rarely cross. “Many Asians I talked to believe AIDS has nothing to do with them, just like Africans 20 years ago,” said Ven Benkong, a Caucasian Buddhist at the Grace Gratitude Buddhist Temple in Chinatown, who has been working on AIDS prevention since the 1980s.

Before he settled in the temple in 2002, Benkong had spent 12 years in Africa working on AIDS prevention. He remembers that in the first workshop he offered in Africa, he asked people to raise their hands if they had family members or friends who had died from AIDS. Nobody did. Only a couple of years later, some of Benkong’s own friends in Africa had died from the disease.

“AIDS originated in Africa, but it was first discovered in the U.S., so for a long time, African people thought it was a white man’s disease. And now when we try to persuade people in Chinatown to take an HIV test, they say, ‘That has nothing to do with me,’ This worries me a lot,” said Benkong.

Even doctors don’t often associate Asians with AIDS. According to the New York DOH, only 6 percent of Asians have ever been pushed to take an HIV test by their doctors, 24 percent lower than the citywide average and the lowest among all ethnic groups.

Therefore, experts suspect the prevalence rate in Asians might have been underestimated. Many Asians, for example, do not learn that they are infected until they are in the late stages of the disease.

At the Asian & Pacific Islander Coalition on HIV/AIDS (APICHA), the only service organization that focuses on AIDS in the pan Asian community in New York, many patients had t-cell counts below 100 by the time they were diagnosed as HIV positive, 50 percent lower than the 200 t-cell threshold for an AIDS diagnosis. And at the CPC, almost all of its 68 current clients didn’t know they had HIV until they were very ill and sent to an emergency room.

“Many of these people had been sick for months. They visited several doctors and did all sorts of tests, but nobody ever suggested they might have AIDS until very late,” said Chin, the director of the CPC program.

According to a report the CDC did in 34 states, 44.5 percent of the Asians who were found HIV positive between 1996 and 2005 developed AIDS within a year, the highest percentage among all ethnic groups.  

“Everyone should get an HIV test when they can, but doctors tend to think Asians are a model minority, and their lifestyle can keep them away from the virus. This is wrong and also dangerous,” said Robert Murayama, the Chief Medical Officer of APICHA, which launched a campaign last year to call on doctors to remind their Asian patients to take the test.

Living with HIV as an Asian

The myths about AIDS are partly responsible for the ignorance among Asians. Although with modern medicines, AIDS is no longer a death sentence, for many Asians, a positive test result  is the same as one. Even worse, in the eyes of family members, friends, coworkers, and employers, being HIV positive often sends out a message that the patient has done something wrong.

Despite the proven medical facts that HIV only spreads through sexual intercourse, contact with infected blood, and from a mother to her unborn baby, many in the community still believe casual contacts with infected people can put them at risk. People with HIV are treated as if they are highly contagious even by their own families. The fear of discrimination pushes them into even deeper isolation.

Murayama recalls a patient living in New York’s Chinatown who recently told him he has decided to move to another city. The patient, a young second generation Chinese living with his parents, told Murayama that since his parents heard he got HIV, his life has been totally changed.

“He told me that every time he used the bathroom, his mother would wash the toilet thoroughly. And once he and his father went to a funeral together, the father pointed to the coffin and said, you’ll be in there soon. He couldn’t bear his parents any more, but he could not afford to live independently in New York either, so he thought the only thing he could do is to move out,” said Murayama. “We have many cases like this. Clearly, Asians’ knowledge of HIV is at least 10 years behind many other communities.”

Professor Chin from Hunter College also finds it’s true through his study. For his research about the religious institutions and AIDS prevention, which will be finished in 2012, Chin and his team have already interviewed people at 27 Buddhist temples and 45 Christian churches that serve Asian members and found only three temples and 14 churches have ever had activities for AIDS prevention.

And when asked their opinions about providing AIDS services, people who work for the institutions offered answers such as: “The disease is somewhat awkward and embarrassing to talk about…HIV/AIDS is different from cancer…” and “At least my temple doesn’t need (HIV education) now. Since the standards of my members are high and their income levels are high…” When asked what if someone who had AIDS moved next door, a nun suggested “avoid contact.”

“There are a lot of misunderstandings,” said Chin.

Afraid of being discriminated against or alienated because of their status, many Asians will try their best to keep it a secret after getting a positive test. The half dozen HIV-positive people interviewed for this story all said they’d rather die than have colleagues and neighbors find out. Those who work all said they are sure they’d be fired if their bosses knew.

But sometimes, the price for this self protection is endangering the health of others. Just ask May Fang*. When she left her two small kids with her mother in Malaysia and came to New York to make a living in 1997, the then 34-year-old Fang was strong and healthy. Like many new immigrants, the single mother held two jobs as a garment factory worker and a home attendant so she could send money back home. A few years later, she met a Chinese man who told her he was a U.S. citizen and was willing to sponsor her for a green card if she’d marry him. Fang thought she had found love and luck. She moved in with the man for about a year until one day he left a goodbye note saying he went to work in a restaurant that is “far far away from New York.”

Fang has not seen the man again, but she got sick not long after he left. She started to cough. It got more and more severe so that she couldn’t even fall a sleep at night. She went to different doctors in Chinatown, but they couldn’t tell her what was wrong until she was eventually hospitalized and diagnosed with AIDS.

“The doctor told me I have 10 years to live. I immediately started to cry. My kids were still small, and my mother was old. How would they survive without me sending money home?” said Fang, who has survived five years after the diagnosis so far.

Although it couldn’t be confirmed, Fang believes she contracted the virus from that runaway boyfriend. “I couldn’t think of any other sources,” said Fang, who  couldn’t control her tears when recalling this.

Chin, the director of the CPC program, noted the number of female clients at the program has jumped 25 percent in the past five years. Many  newly infected females have contracted the virus from their male partners, without knowing the men had HIV.

Persuading patients to disclose to their families, especially their spouses, is a major challenge for the social workers at CPC, said Chin. Social workers are not authorized to disclose a client’s information to any third party, including family members. But they also know how dangerous it is for the clients to keep their secret from spouses. “We try to help clients understand how important it is to tell their family, but if they don’t listen to us, we cannot do anything. We have to stick to the law. But we often get a moral conflict,” said Chin. 

Tougher challenges yet to come

Still, to Chin and many others who are working on AIDS prevention in the Asian community, a greater challenge may be coming, thanks to President Obama’s recent lift of the 22-year-old travel and immigration ban against people with HIV.

The previous ban, based on the now outdated belief that AIDS is more easily transmittable, didn’t allow HIV positive foreigners to get into the United States. And applicants for green cards or citizenship could be declined if they were found to have HIV. But with Obama’s move, it’s no longer the case starting January 4. 

The new law may impact all immigrant communities, but the Asian community, where 70 percent of diagnosed patients are foreign-born, may need extra attention. With an HIV-positive population of 4.9 million, Asia has already become another major center of the epidemic. With greater freedom of travel, Asians living in the United States and their peers in Asia will have a better chance of passing the virus to one another.

 “We don’t want to encourage the anti-immigrant sentiment,” said Therese Rodriguez, chief executive officer of APICHA. But she noted: “The epicenter of AIDS is moving to Asia. The populations go back and forth. The infection is both ways.”

Still, service providers in the Asian community are all thrilled by the repeal of the old law. With the stigma and fear forced on the patients by the government now gone, they are expecting it to be easier to persuade community members to take the HIV test.

And the infected people interviewed for this story — many of whom halted their green card or citizenship applications because of the old requirement — reacted even more emotionally. A 64-year-old man, when told about the revised law, covered his face with both hands and cried uncontrollably, apparently overwhelmed by the good news.

But service providers are worried that greater demand for prevention services in the community may catch them off guard because of the lack of funding. The allocation of government funding is largely based on the total number of infection cases, and therefore the Asian community gets the smallest share of funding from federal and local governments.

In New York, the CPC doesn’t get any funding from the city’s DOH and APICHA, which used to get prevention funding from the city, but lost its contract two years ago (although the organization gets funding for other services). Given that these two are the major community-based organizations that focus on the Asian population, service providers complain the city no longer funds prevention programs in the community.

But Monica Sweeney, the Department of Health’s assistant commissioner for HIV/AIDS prevention and control, said the accusation is “absolutely not true.” Sweeney said the city realizes the prevalence rate in the Asian community is low, but “for HIV infection, one is too many” and in terms of prevention “everyone is priority.”

Regarding the prevention funding, Sweeney said, “City contracts are always like this. When some contracts end, others open. Many organizations that get city funding have Asian clients.” When asked for examples, she listed the AIDS prevention programs at Bellevue Hospital and at the Hetrick-Martin Institute.

But Rodriguez, the chief executive officer of APICHA, is not convinced. She pointed out the former is a big hospital that is hard to navigate, and the latter is an organization serving lesbian, gay, bisexual and transsexual youths in the East Village. “The city wants other people to take care of Asians, but without the language access and cultural understanding, how could they do it?” said Rodriguez.

Hope rising from young people

If all of this makes the picture sound a bit gloomy, some still believe a change can be made. Among them is William Ching.

To the 23-year-old new college graduate, the only way leading to understanding and better care for HIV-positive people is to break the silence. A year ago, the San Francisco-based Ching launched a program called United AIDS Project that encouraged HIV-positive youth to share their stories online.  As a start, Ching posted a touching and encouraging story about himself.

Ching was found HIV positive in July 2007 during a routine health check. “I foolishly believed that only certain groups contracted HIV: the promiscuous, the intravenous drug users, and the social deviants. So when I received my diagnosis, I was overwhelmed with an incredible shame, a shame so strong that for a time, I was unable to look at myself in the mirror,” Ching wrote in his blog.

But when he pulled himself up from the shock and started to look for others in the same situation for advice, he was hit again, this time, by disappointment.

“I visited some websites for HIV-positive people, but found most people talking there are older white men. Few are minority young people, and almost no Asians. There is a dearth of resources for young people, especially people of color,” said Ching. “I am still sensitive about my status. But I think if I don’t do this (share experience), who will?”

It was not an easy task. The pressure comes first from the family. Ching’s father has passed away, and his mother, a Korean American homemaker, is an open-minded person compared with many Asian women of her generation. When Ching told her years ago that he is gay, she told him, “I still love you.” When he told her he was HIV-positive, she cried, but pledged, “I will take care of you.” But when he mentioned the idea of publicizing his HIV status, she was lost, and blamed him for “embarrassing the family.”

He also felt the bias from the community. A couple of months ago, he answered an advertisement looking for someone to share an apartment, but he was declined when the south Asian landlord found his story online.

Although it has drawn some traffic, the Web site didn’t find as many Asians who’d like to come forward as Ching expected.

But this didn’t deter him. He is now traveling around the country to collect HIV stories from minority youths. “The Asian culture is a culture of silence,” said Ching. “But I want people to know HIV doesn’t define who we are. We are not less human than anyone else, and we deserve to be happy.”   

This story was supported by a Dennis A. Hunt Health Journalism Grant from the USC/California Endowment Health Journalism Fellowships.  The names marked by * have been altered at the request of the interviewees.