Dhan Biswakarma and his wife, Bee Biswakarma, who live in Kent, are among several deaf Bhutanese refugees who have been learning American Sign Language at Highline Community College. Photo Allison Barrett

By Allison Barrett

Nancy Allen, an American Sign Language (ASL) teacher at Highline Community College, goes through a stack of name cards, holding up each one and looking quizzically at the students.

“Whose is this?” she signs.

A short man in his 50s smiles hesitantly and raises his hand slowly as he sees the card with his name.

“What is your name?” Allen signs.

The man points to his chest, crosses his fingers in the sign for “name” and then slowly shapes his stout, weathered fingers to form: “D-H-A-N. My name is Dhan.”

Sitting next to him, his wife laughs out loud as her turn comes. She stumbles over the signing sequence, but she follows Allen’s lead and carefully signs her name.

“My name is B-E-E. Bee.”

For Bee and Dhan Biswakarma, Bhutanese refugees restarting their lives in Kent, the struggles of resettlement are intensified by the fact that the deaf couple has few means of communicating with the speaking world.

The Biswakarmas are among a number of deaf or hard-of-hearing Bhutanese refugees who have been resettled in King County in the past several years. Last spring’s class at Highline represented the Biswakarmas’ first exposure to a developed language.

“They have gone their whole lives with no formal language, getting by without a lot of communication,” said David Van Hofwegen, the couple’s caseworker from the World Relief Organization.

They have a repertoire of gestures to communicate with family members. But when it comes to sharing their thoughts with the hearing world, they are limited to signing the basics: eat, sleep, sick, house, wife, child.

And family.

In class, Bee has difficulty remembering how to sign her name, but she immediately grasped the expression for family. At home, she makes the sign after pointing to each relative seated on the mismatched jumble of couches and wooden chairs.

Sher Pandey (in baseball cap), his wife, Basu Pandey (to his left), and Man Budhathoki (at right) practice signing at Highline's American Sign Language class last spring. Photo Allison Barrett

Bee, 47, and Dhan, 55, met in a refugee camp along Nepal’s eastern border after each fled Bhutan by foot in 1991.

They were driven out of their home country by policies implemented in the mid-1980s to forcefully integrate the ethnic Nepali inhabitants of southern Bhutan into the monarchy’s vision of a unified national identity.

Southern Bhutanese were required to go to impossible ends to prove citizenship, ordered to stop teaching Nepali in schools and to abandon traditional dress and customs.

They protested and the military cracked down.

Homes were raided at night and dissidents were jailed, said Bal Biswa, a relative who helps to take care of Bee and Dhan.

Dhan and his extended family, including his relatives and caretakers Bal and Pabita Biswa, joined 23 other families to walk out of Bhutan, sleeping in the forest by day and traveling at night.

According to the United Nations High Commission on Refugees, since 1990 almost 100,000 southern Bhutanese have fled the tiny Himalayan kingdom that is often hailed as the “happiest country in the world” and celebrated for its measurement of Gross National Happiness.

Sitting in the Kent apartment that he and Bee share with Bal and Pabitra, Dhan points at Pabitra and then brings his hand above the ground in a gesture that looks like he’s placing it on the head of an invisible child. He pantomimes that he is carrying something.

Pabitra explains that Dahn helped her carry her kids out of Bhutan. She and her husband, Bal, lost two of those young children to a fever that broke out in the squalor of the early encampments.

Bhutan. Map by Shahid Parvez under Creative Commons license.

Little preparation

Bee and Dhan arrived in Seattle early this year, part of the more than 1,800 Bhutanese who have been resettled in Washington state since 2008. They came with their son, 12-year-old Golpal, who is able to hear and lives with other relatives.

The couple had little preparation for life here.

Bee and Dhan were both born deaf, leaving limited options for employment or education. Bhutan had no established sign language until 2003, when the monarchy opened its first school for deaf children.

“You are considered backwater in society,” said Mitra Dhital, a Bhutanese refugee who works as a medical social worker for the Asian Counseling and Referral Services.

In many ways, they are even less independent in America.

Bee and Dhan don’t like to walk the five blocks to a grocery store alone, for fear of getting lost. Sometimes they stroll around the perimeter of the building, but never leave the grounds.

At first they were fearful of going to their ASL class. They were daunted by many things, including the bus ride there, until the World Relief organization provided a volunteer-driven van ride.

Among the eight Bhutanese class members, there is a range of hearing impairment, from Bee, who lives in complete silence, to a man in his mid-30s who has no hearing in one ear and is slowly going deaf in the other.

The number of those who are deaf or hard-of-hearing represent only a small percentage of the Bhutanese refugees here. But caseworkers say it is an unusually large number compared to other refugee groups. No one is certain why.

It is unclear whether that is the result of policies that give the deaf resettlement priority because of their lack of opportunities in the camps, or if the number reflects a high occurrence of deafness within Bhutan.

The World Health Organization estimates that of the 278 million people in the world living with moderate to profound hearing loss, 80 percent live in developing countries. And about half of all cases are preventable, caused in part by illnesses like measles, mumps and rubella that have readily available vaccinations in the developed world.

Ear infections, exacerbated by poor sanitation and hygiene, often went untreated in the refugee camps for Bhutanese, said Dhital.

Allen is adamant that even without a formal language, Bee and Dhan understand each other just fine. “All deaf people have a language,” said Allen.

The challenge for Bee, Dhan and the others in the class is finding a way to interact with the hearing world.

Allen, director of interpretive services at Highline, was approached about starting an ASL class for deaf Bhutanese about a year ago. She had never taught a class tailored to refugees.

Around the same time, Allen ran into a Bhutanese couple in the college’s parking lot, a hearing woman with her deaf husband. The wife, enrolled in English classes at Highline, was in search of a class for her husband.

“The light bulbs started going off,” said Allen. “There are other deaf refugees here. There is a need that is not being met.”

She says her deaf co-teacher, Ricardo Velilla, is the key to the class.

Extremely animated, he can model abstract concepts with ease. He acts out a jaunty stroll down the road, a runaway vehicle and narrowly averted catastrophe. He then runs the palm of one hand up the back of the other in a smooth motion. This is the sign for “almost.”

For a short time, Allen and Velilla had a deaf man from Somalia in their class.

“One day he came in very agitated, making all these wild motions,” said Allen. “Ricardo took one look at him and explained to me, ‘He used to have a driver’s license in his home country but he’s frustrated because he can’t get one here.’ ”

Allen knows lots of other deaf refugees and immigrants could benefit from access to ASL. But for now, the class is only offered once a week.

Until Bee and Dhan acquire enough ASL to communicate ideas to the hearing world, their prospects for employment are dismal.

Van Hofwegen is assisting them with the lengthy and very difficult process of qualifying for federal disability benefits.

The program doesn’t accept international evidence. You have to visit a primary physician for a referral and get screened by certified audiologists and other specialists, a procedure that requires Bee and Dhan, accompanied, to run to appointments all over the county.

Evening sets in, and the Kent apartment is filled with the scent of Nepali dumplings. Golpal and some neighbor boys are engaged in a cutthroat game of marbles on the floor. Bal and Pabitra’s sons are using the bulky computer in the corner, browsing Facebook and watching Bollywood videos on YouTube.

Dhan retreats to the bedroom and returns, carrying a sheet of paper. He takes a seat next to Bee on the couch.

They both lean over the manuscript that is covered in a scrawling alphabet, written in Dhan’s shaky hand, and start to shape their fingers into signs, beginning with the letters of their names.

Allison Barrett, a UW senior, wrote this piece for Health Intersections, the UW Communications Department’s class on global health reporting. She can be reached at allisondbarrett@gmail.com

The hepatitis B virus, or HBV, is a leading cause of liver cancer, so when Connie Chan’s grandfather was diagnosed with liver cancer, all the members of her family wondered if they too might be infected with the cancer-causing virus.

“It was scary,” said Chan, a student of public health at the University of Washington “He could have transmitted it to everyone in the family and no one might have known.”

In the end, it turned out her grandfather did not carry HBV. Nevertheless, the scare led Chan to want to learn more about the virus, so in January she joined UW’s Team HBV, a chapter of a national organization dedicated to raising awareness of the risks of hepatitis B infection and to promoting testing and vaccination, particularly among Asian and Pacific Islanders (APIs) and other immigrant communities.

The U.S. Centers for Disease Control and Prevention (CDC) estimates that between 800,000 and 1.4 million Americans have chronic HBV infections—and that two-thirds don’t know they carry the virus.

HBV virions -- CDC

APIs are at particular risk: although they make up about 4.5 percent of the U.S. population, they account for 50 percent of the cases of chronic hepatitis B infection.

Asian Americans and Pacific Islanders not only have the highest rates of chronic infection, the CDC says, they also have a higher risk of developing liver cancer as a result of the infection than do other racial and ethnic groups.

In fact, liver cancer is the third leading cause of cancer death among Asian American, Native Hawaiian and other Pacific Islander groups, whereas liver cancer is 16th leading cause of cancer among non-Hispanic whites.

Vaccination can prevent infection and treatment is available for infection.

Earlier this month, Chan joined with fellow students, health professionals and community members at the 2011 Hepatitis B Forum, one of a series of community events this May to mark Viral Hepatitis Month.

Among the event’s participants were Virginia Mason Medical Center, International Community Health Services, and Harborview Medical Center .

The partnership with the international community, said Kim Nguyen, program manager for the Hepatitis B Coalition of Washington, which organized the forum, is important because it offers innovative approaches to tackling a virus that disproportionately affects many foreign-born populations.

“Many [of those infected] don’t know they have it because it’s a silent virus, it doesn’t show symptoms readily or quickly,” Nguyen said.

HBV is most commonly transmitted through contact with blood and infected bodily fluids. Intravenous drug use and sexual activity are common causes of its spread, but many infants are infected during childbirth if their mothers carry the virus.

In underdeveloped countries, many mothers lack basic prenatal care and so give birth without screening for such viruses as hepatitis B, Nguyen explained, and if HBV is contracted in infancy, individuals are significantly more likely to develop a chronic infection.

People who are at highest risk are those who are born overseas in regions where rates of HBV infection are high. This includes Southeast Asia and China but also sub-Saharan Africa, home to many of the region’s new immigrants, said Nguyen.

Prevalence of HBV surface antigen a sign chronic infection -- CDC

In many of these regions, HBV infection carries a social stigma making frank discussion about the disease difficult, says Chan. “It’s related to sex and drugs and that’s not really talked about as openly as in America,” she said.

To encourage discussion, Chan and others are developing “ethnically sensitive” awareness campaigns.

In one campaign, Chan and her teammates at the University of Washington made life-sized posters of individuals holding signs about HBV and displayed them throughout campus to encourage students to get informed.

The Fred Hutchinson Cancer Research Center with the help of several community partners has created informational pamphlets in Chinese, Farsi, Korean, Punjabi, Khmer and Vietnamese.

Progress is being made, said Nguyen, several community health fairs are now offering hepatitis B testing in addition to the usual high blood pressure and diabetes screening.

But more and broader outreach is necessary, says Nguyen, as immigration patterns have changed and more and more people arrive in the region from East and sub-Saharan Africa, so has the face of hepatitis B.

Celina Kareiva is a contributing writer for Seattle LocalHealthGuide, Seattle Weekly and Real Change. She is a graduate student in the Journalism program at the University of Washington and has written and edited for the student paper, The Daily.

To learn more:

• Visit the website of UW Team HBV.
• Visit the website of the Hepatitis B Coalition of Washington.
• Read the section on hepatitis B in the HHS Plan for Asian American, Native Hawaiian and Pacific Islander Health.
• Visit the CDC’s Hepatitis Awareness Month webpage.
• Visit the educational material page of Ethomed, which includes brochures and videos in a variety of languages.

The half-day event, called B Informed Now! Patient & Community Workshop on Hepatitis B & Living with Liver Cancer, is free and breakfast and lunch–as well as and Cantonese, Mandarin, and Vietnamese interpretation–will be provided.

Hepatitis B is a viral infection of the liver that can, if it becomes chronic, cause cirrhosis and liver cancer.

The U.S. Centers for Disease Control and Prevention (CDC) estimates that as many as two million people in the U.S. have chronic hepatitis B infections.

Hepatitis viruses - Photo: E.H. Cook/CDC

Of these, more than half are Asian Americans, Native Hawaiians, or other Pacific Islanders.

These groups not only have the highest rates of chronic infection, the CDC says, they also have a higher risk of developing liver cancer as a result of the infection than do other racial and ethnic groups.

In fact, liver cancer is the third leading cause of cancer death among Asian American, Native Hawaiian and other Pacific Islander groups, whereas liver cancer is 16th leading cause of cancer among non-Hispanic whites.

The risk of chronic hepatitis B infection is highest among foreign-born Asian Americans and other Pacific Islanders with approximately 10 percent being affected, the CDC says.

There is an vaccine to prevent infection, and, while there is no cure, there are drugs that can reduce the risk of liver damage due to the virus.

The workshop’s talks will be given by Dr. Chia Wang, an infectious disease specialist at Virginia Mason Medical Center and Dr. Stephen Chen, a cancer specialist at Polyclinic First Hill.

The workshop’s organizer, the Hepatitis B Community Engagement Project, is a collaborative initiative between the Hepatitis B Coalition of WA and International Community Health Services.

The event is sponsored by the Hepatitis B Foundation, a national nonprofit research and disease advocacy organization, and Seattle Public Schools.

TITLE:

• B Informed Now! Patient & Community Workshop on Hepatitis B & Living with Liver Cancer

WHEN:

• Saturday, Dec. 4th, 9 a.m. to 1 p.m.
• Registration begins at 8:30 p.m.
• Free but RSVP requested. To RSVP: call 206-788-3687 or email kimn@withinreachwa.org

WHERE:

• Asian Counseling & Referral Services (ACRS) Community Hall
• 3639 Martin Luther King Jr. Way S., Seattle, WA 98144

To learn more about hepatitis B

• Visit the National Library of Medicine’s Hepatitis B information page, which provides basic information as well as links to a wealth of online resources.
• Visit Public Health – Seattle & King County’s Hepatitis B information page, which has information about the virus in Burmese, Chinese, Korean, Russian, Spanish, Somali and Vietnamese.

• Another good resource can be found on the webpage of the National Hepatitis B Initiative for Asian Americans and Pacific Islanders.

The Asian-American community of Hmong women in California carries a stunning burden of cervical cancer and resulting mortality four times as high as non-Hispanic white women in California do.

In possibly the first study to document a baseline in the Hmong community for women undergoing screening for cervical cancer, researchers found that “only 74 percent have had a Pap test and only 61 percent have had this test within the past three years,” said lead author Dao Moua Fang.

“When you compare this with California women overall — at 91 percent and 86 percent respectively — there is great disparity,” said Fang, program manager at the Hmong Women’s Heritage Association in Sacramento.

Single, often American-born, educated, English-speaking Hmong women were least likely to get a Pap test.

“Some are in denial, wanting the Pap test for their mothers — but not themselves.” Fang said. “Others are just unaware that they need a Pap test, because they were never advised to get one from their mothers or primary care physicians.”

Many Hmong women avoid screening and even treatment for cervical cancer for numerous reasons, among them cultural barriers and stigma, said Fang, who is herself Hmong.

“Older women are shy and find physical exams and invasive therapies embarrassing. But they also are afraid that their spouse might leave them if they are diagnosed with human papillomavirus, an abnormal Pap smear, cervical cancer or anything that suggests they might have been unfaithful. And if women are not unfaithful, then they suspect that their spouse might be.”

Because of this study, Fang and her colleagues developed a patient navigator program to make appointments, translate and provide one-on-one education about cervical cancer.

This is an important study, because there is a serious lack of data on Asian American, Native Hawaiian and Pacific Islander health, said Roxanna Bautista, chronic diseases program director at the Asian and Pacific Islander American Health Forum.

“The data that do exist usually lump us all together as Asians,” Bautista said. “This study demonstrates that keeping America’s women and families healthy starts with outreach and education programs that take into account differences in language and culture.”

According to the latest U.S. Census bureau report, about 206,000 Hmong live in the United States at this time.

To learn more:

• Read Dao Moua Fang’s paper Factors associated with Pap testing among Hmong women in the Journal of Health Care for the Poor and Underserved (subscription or fee required).
• Visit the Hmong Women’s Heritage Association’s website.

Local Resources:

• International Community Health Services: www.ichs.com

Health Behavior News Service is part of the Center for Advancing Health

The Health Behavior News Service disseminates news stories on the latest findings from peer-reviewed research journals. HBNS covers both new studies and systematic reviews of studies on (1) the effects of behavior on health, (2) health disparities data and (3) patient engagement research. The goal of HBNS stories is to present the facts for readers to understand and use for themselves to make informed choices about health and health care.

But the same surveys show that most of us don’t realize that that patients from certain racial and ethnic minorities often receive much lower quality care than most Americans.

In her column this month, Dr. Lori Whittaker, a family physician and a consultant with the Puget Sound Health Alliance, writes about efforts to close this health-care quality gap.

Gaps in Quality Care are Wider for Certain Groups in Our Community

By Dr. Lori Whittaker

As a doctor, I am concerned about whether people in the Puget Sound region and across the country get health care that is safe and effective. 

We know that there are sometimes gaps in the quality of healthcare delivered, and that these gaps are even wider for people in certain minority groups, people whose primary language is not English, and people who are socially or economically disadvantaged. 

We know, for example, that people in racial or ethnic minority groups are more likely to have chronic conditions like heart disease and diabetes, and are more likely to suffer disability and death from such conditions.

Organizations including the Robert Wood Johnson Foundation, the Puget Sound Health Alliance, Seattle Children’s and Harborview are working on tackling these racial and ethnic disparities in health care.

The vision and goal is to ensure that safe and effective health care is provided for everyone.

Which is what Americans think should happen.  A recent survey by the Robert Wood Johnson Foundation found that people overwhelmingly agree that everybody deserves safe and effective care. 

The problem, pollsters learned, was that a sizeable portion of our citizens didn’t realize that there are racial and ethnic differences in who gets safe and effective health care.

The truth is that all health care is not equal. But certainly racial and ethnic disparities are not a big problem for health care in our region…or are they?

Did you know that here in the Puget Sound region we live in one of our country’s most diverse communities?  On a given day you can walk through the Rainier Beach and Othello neighborhoods in southeast Seattle and hear 60 different languages and dialects spoken there. 

60!  Somali, Thai, Amharic, Spanish, Ukrainian, Russian, Vietnamese, Korean…the list goes on and on.

Now imagine that you are a doctor or other health care professional who needs to communicate effectively with patients who know very little English, at a time when the patient is in pain or at their most vulnerable. 

Communication between patients and doctors or nurses is essential for appropriate delivery of effective care, so imagine the challenge that so many possible language barriers can create.

In addition to language issues, disparities can arise for many other reasons: low levels of literacy and “health literacy” (which is how easily people can understand health care jargon), cultural differences, and economic barriers. Despite these barriers, the community as a whole is beginning to work together to ensure that everyone gets safe and effective care.

Our own Puget Sound Health Alliance is helping to make connections between doctors’ offices, hospitals and community groups in an effort to build bridges so we can work together to achieve health equity. 

The first step in tackling any problem is knowing the facts.  That’s why you may have been asked to state your race, ethnicity or primary language when you last visited the doctor or hospital.

Health care teams in hospitals and clinics who ask this are tracking this information to make sure that they provide every patient with high quality health care.

The Health Alliance is looking at novel ways of analyzing the regional quality data it is collecting to help identify healthcare disparities.  

Someday, we hope that the public Community Checkup report (www.WACommunityCheckup.org), which compares health care provided in local clinics and hospitals, will also measure progress toward eliminating health disparities.

Yes, there are racial and ethnic disparities in health care-even in our own community, which is one of the most diverse in the country.  But by being aware of the problem, and everyone working on it together, we can do something about it.

Dr. Lori Whittaker is a practicing family physician who provides consultation to the Puget Sound Health Alliance.