Advocates look to expand programs that address a legacy of the Pol Pot era: an epidemic of heart disease, diabetes and stroke among Cambodian-Americans.
By Colleen Shaddox
Thursday, June 23, 2011
Miller-McCune Magazine
Santa Barbara, California
Sobin weeps and curls tightly into herself, as if she’s trying to disappear into the folds of her overstuffed sofa. Moments later, scowling, she plants her feet and shouts in Khmer. She shakes her fist at someone who isn’t there. The objects of her fear and rage are the Khmer Rouge soldiers who forced her into slave labor as a child on what was once her family’s farm. Convinced that the Khmer Rouge continue to look for her, Sobin, who lives in a small city in the Northeast, asked that her last name not be used in this article.
During her captivity in the 1970s, Sobin was surviving on a small daily ration of rice porridge. Sometimes, she could not work as quickly as the soldiers demanded, and they would tie her down in the hot sun for hours. Sobin estimates her age at 49, explaining that deep in the jungle, no one kept track. She has spent her adult life in the United States. But for this refugee, the past has not receded into mere memory. She remains that terrified girl.
Cambodian refugees in the United States are in extremely poor health, according to many studies. Advocates say that the burden of trauma that survivors like Sobin carry contributes to this quiet epidemic among Cambodian-Americans. They cite the extended periods of starvation many Cambodians endured between 1975 and 1979, when an estimated 2 million people died under dictator Pol Pot, and describe present cultural and language barriers to health care. Unless those barriers are overcome quickly, they say, the death toll will continue to climb from Cambodia’s Mahant Dorai — literally, “The Great Destruction.”
“Sixty-year-olds are dying,” says Sara Pol-Lim, executive director of United Cambodian Community of Long Beach, Calif., home to the largest Cambodian population in the United States. Most became refugees in the 1970s, when their native country was in turmoil from civil war, authoritarian rule, ethnic cleansing and American bombings. Pol-Lim is seeing many cases of diabetes, chronic pain and other physical problems that she links to long-term, often untreated post-traumatic stress disorder.
But there’s a problem: No study conclusively proves Cambodian-Americans have high incidences of cardiovascular disease, diabetes and stroke because of what happened to them in the ’70s. Such causality would be extremely difficult to establish, and the Cambodians here in the U.S. haven’t been well studied.
July-August 2011 Advocates are struggling to bring national attention to an issue that for most Americans is literally history: the suffering of Cambodians under Pol Pot. At press time, Cambodian-American leaders were scheduled to testify at a policy summit organized by the Congressional Asian Pacific American Caucus in May at the invitation of the caucus chair, Rep. Judy Chu (D-Calif.). They are seeking federal funding for a telemedicine program that would coordinate care for Cambodians scattered across the U.S., in an attempt to overcome the language and cultural barriers they say contribute to the community’s poor health.
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Though health research on Cambodian-Americans is sparse, its conclusions are striking. A 2010 Rand Corporation study of Cambodian refugees living in Long Beach found they scored worse on key health indicators than Californians in general and worse than other Asian immigrants matched for factors such as age and income. Asked to rate their own general health, 89 percent of Cambodian refugees answered fair or poor, the two lowest selections on the scale; that’s about four times the rate of the general California population and twice that of the matched group of Asian immigrants.
These self-perceptions are powerful. The scale the researchers used has been validated as an even stronger predictor of mortality than an exam by a physician. The Cambodians also showed much higher rates of disability — 70 percent — than either of the comparison groups.
Mortality data from Massachusetts in 2003 showed Cambodian-Americans dying from complications of diabetes at more than five times the rate of the general population. Their death rate from stroke was more than double the general population’s. Other studies show Cambodian-Americans scoring poorly on measurements of health management. One found that most adult Cambodian-Americans did not know their cholesterol levels.
The U.S. Census Bureau estimates the number of Cambodian-born people living in the U.S. at less than 300,000. The small size of the Cambodian community not only makes the group difficult to study; its human-services infrastructure is similarly modest. With the population spread across the country, about half the states have no organizations specifically serving Cambodians, according to a report by the National Cambodian American Health Initiative, a policy group composed of Cambodian leaders from around the country, based in West Hartford, Conn. Many of the organizations that do exist have annual budgets of less than $25,000.
At the same time, a blend of cultural and practical issues can make it difficult for Cambodian immigrants to use mainstream providers. For example, the average doctor might not take into account their beliefs about traditional healing, and there is a stigma in the community about mental illness, in part born of language. The nearest translation for “mental illness” in Khmer is “schizophrenia.”
Because the Cambodian community remains largely separate from mainstream America, most concern about a Cambodian health crisis springs not from large studies but from the observations of direct service providers working with Cambodian-Americans.
“The community told us. They feel it,” says Theanvy Kuoch, executive director of Khmer Health Advocates, also in West Hartford. KHA started out as a mental health organization, but Kuoch says that the group has been overwhelmed with cases of diabetes since the 1990s. The organization’s focus has shifted to include programs that help clients manage chronic physical illness.
Kuoch and KHA director of programs Mary Scully have stretched their resources by employing the same model that served them well when they met in a Thai refugee camp in the 1970s. They train Khmer speakers as community health workers who can educate people about healthy behaviors and serve as translators, literally and figuratively, in a complex health care system. The workers also help clients deal with the isolation common in this small community.
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Rann Vann lights up when her community health worker, Vicheth Im, knocks at the door of her Danbury, Conn., home. Vann welcomes Im into a compact kitchen and sitting room filled with family photographs and prints illustrating stories about Buddha. A picture of her father, a stately man in a white tunic, dominates the room. He died two weeks after the family arrived in the United States in 1986. Vann attributes this to his weakened condition after years of forced labor. Her mother starved to death on one of Pol Pot’s farming collectives. Vann herself was taken for dead from starvation on that farm, she says, but when soldiers went to bury her, she stirred slightly beneath the white sheet they had draped over her.
“I live in this country by myself. I’m afraid of the daylight. I’m afraid of the night,” Vann says, with Im acting as translator. Her conversation is interspersed with English words and phrases as well. Thanks. Oh, yes. Lonely.
Vann had an accident on her job in a machine shop and injured her side. Even with the help of an interpreter, it is difficult to tease out her health problems. A doctor gave her an inhaler for breathing difficulties, but he made no diagnosis that Vann can remember. Her hair, luxuriant with black curls in older photos, is now pulled back into a petite chignon. It has been falling out in clumps, Vann says. Sometimes she’s dizzy. Sometimes her ankles swell. She falls frequently — nine times in her recent memory. One fall sent her to the hospital with a head wound.
“When I went to the doctor, he said, ‘Be careful. Don’t fall again,’” she says, laughing. Doesn’t he know that she doesn’t want to fall?
When funding allows, Khmer Health Advocates uses videoconferencing to make workers like Im, often paired with pharmacists, available to Cambodian immigrants around the country. A recent trial provided the service remotely in California, as well as in person for Cambodians living in Massachusetts and Connecticut.
Thomas Buckley, an assistant clinical professor at the University of Connecticut’s School of Pharmacy, worked with KHA to ensure that clients were taking the right medications. The project enrolled people over 60, some of whom took 18 different drugs every day. Buckley says he’s encountered patients taking four prescriptions that did the same thing. He estimates that $3 to $6 is saved for every dollar spent running the program; savings come from reduced prescription costs and reduced visits to clinicians.
Kuoch and Scully spent much of the spring knocking on doors on Capitol Hill, asking for federal funds to continue and expand the work. Initially, they hoped for congressional hearings on Cambodian health on April 17, the anniversary of the Khmer Rouge’s takeover in Cambodia, but that effort was abandoned.
“The community isn’t ready,” said Kuoch, noting how difficult it can be to get survivors to tell their stories. They’re settling for a chance to meet with the Asian caucus and work with sympathetic representatives to get regional hearings in their districts.
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Simply convincing Cambodians who lived through the Khmer Rouge horror that someone cares about their health is a major achievement, Kuoch says. During the Mahant Dorai, she remembers, “death became normal.” And Scully says she sees a fatalism in survivors of the genocide that can lead to unhealthy behaviors and an avoidance of medical care.
Asked why she doesn’t press doctors to find a cause of her problems, Vann stares down at her lap. “Right now, I think: Am I young or old? I’m old. If you’re old, at some point you have to die,” she says. Vann is 61.
Scully is convinced that the wave of diabetes, stroke and other illnesses that are killing the Cambodian-Americans she sees is the result of the trauma they suffered in their homeland. She talks about measuring levels of cortisol, a hormone released in response to stress, and looking for connections with physical illness. But she knows that as this small community ages, the time to make the case is running out.
Sobin cries angry tears when she talks about the trials of accused Khmer Rouge leaders. She resents the defendants getting the opportunity to tell their stories in court. “We never had a voice,” she says of her fellow captives.
Scully has encouraged Sobin to write a memoir. Sobin shakes her head at the idea. Though she’s just spent the afternoon describing her experiences in disturbing detail, she cannot imagine putting them on paper.
“Let it die with me,” she says.
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