photo of traditonal hmong shaman

In traditional Hmong culture, it is believed that illness occurs when the soul wanders from the body. Shamen, like Kang Thao, help call the soul home.

Bringing cancer-prevention information to a people with no word for cancer

At the Wat Tham Krabok refugee camp, a settlement of makeshift corrugated steel and bamboo huts about 60 miles north of Bangkok, Aeng Chang did what he could to fight his bladder cancer. He hired a shaman to perform a soul-calling ceremony. A cow, buffalo and pig were sacrificed. Chang also used healing herbs, roots and tree leaves. The only treatment he rejected was radical cystectomy, the surgical removal of his bladder, recommended by a medical doctor in a nearby town.

After 25 years in refugee camps, Chang arrived in California in June 2004. He, his wife, See Thao, and their eight children, ages 2 to 17 at the time, were the first of some 15,000 Hmong refugees from Wat Tham Krabok who received U.S. Department of State permission in 2003 to resettle in the United States. Chang's advanced cancer propelled his family to the front of the relocation line. Immigration authorities hoped American doctors might save the former soldier's life.

But nine days after arriving in Sacramento, Chang died at UC Davis Medical Center of inoperable, metastatic cancer of the bladder and rectum. He was 41.

It's a tragedy Moon Chen doesn't want repeated.

“Our newest Hmong immigrants have waited so long and come so far — we want to arm them with the information they need to live long, healthy lives,” says Chen, professor of public health sciences and associate director for cancer disparities at UC Davis Cancer Center.

Life-saving information

Through a National Cancer Institute-funded project known as AANCART — for Asian American Network for Cancer Awareness, Research and Training — Chen initiated an unprecedented effort to address the fears and traditional beliefs that may prevent these new Californians from getting regular cancer screening, recognizing early cancer symptoms, and, when cancer is diagnosed, undergoing effective treatment.

Chen and his colleagues have gathered a wealth of information about the cancer incidence, risk factors and information needs of the Hmong, and mobilized one of the area's largest Hmong organizations, the Hmong Women's Heritage Association, to spread the word.

“The cancer burden facing the Hmong and other Asian American communities is unique, unusual and unnecessary,” Chen says. “Unique, because Asian Americans are the only racial group who experience cancer as the leading cause of death. Unusual, because some of the leading cancer killers of Asian Americans are infectious in nature. Unnecessary, because risk factors for many of the cancers, such as those due to viruses or tobaccco, are preventable.”

Bladder cancer, for example, can be caused by a  parasitic disease, schistosomiasis, endemic in Southeast Asia. The Hmong also have high rates of liver cancer, due to chronic hepatitis B infection.

Cervical cancer is prevalent as well. Pap smear rates are low, and the disease is often diagnosed at an advanced stage.

A new land

California is home to at least 65,000 Hmong, most of whom arrived as refugees in the late 1970s and 1980s, driven from their homeland by the Pathet Lao after the United States withdrew from the Vietnam War. Of the new Hmong who received permission to relocate in 2003, an estimated 4,000 were expected to settle in Sacramento, which has the nation's third-largest concentration of Hmong after Fresno and St. Paul, Minn.

AANCART has reached out to both groups. For the new Hmong immigrants, the focus is on eliminating infectious causes of cancer, primarily through hepatitis B immunization. For the Hmong who have been in the United States a decade or more, the focus is on preserving the community's low lung, colon and breast cancer rates through education about the risks of such Western behaviors as smoking, a high-fat diet and a sedentary lifestyle.

A course called “Cancer Awareness 101” is the centerpiece of AANCART's Hmong outreach. It is designed to give members of the Hmong community, particularly the elders and shamen who often serve as medical decision-makers for their families, the same baseline cancer knowledge that more mainstream Americans grow up knowing: Excess sun exposure can cause skin cancer. Regular Pap tests prevent deaths from cervical cancer. Smoking causes lung cancer. Breast self-exams can detect tumors while they are small and easier to treat.

It's a straightforward idea, but the initial all-day Cancer Awareness 101 course, offered at a hotel conference room on the Medical Center campus in March 2003, encountered unanticipated complexities.

What is a cell?

Reginald Ho, a past president of the American Cancer Society, served as instructor for the pilot course. He quickly realized how few Western medical teams have counterparts in the Hmong tongue.

The word “cell” alone took 20 minutes to communicate. Ho's Hmong translator chose the Hmong word nqaj, meaning "the smallest thing," a controversial choice. Some in the audience, fluent in both Hmong and English, preferred noob, meaning "seed." Others made a case for adopting the English word, cell. Similar debate ensued over translation of the many internal organs that have no name in Hmong.

At the end of the day, UC Davis medical students of Hmong ancestry agreed to prepare Hmong-language versions of the course. Today, Dao Moua of the Hmong Women's Heritage Association has taken over the Cancer Awareness 101 effort. She is host of a talk show on a Sacramento Hmong radio station that introduces listeners to the basics of cancer prevention, screening, diagnosis and treatment.

With AANCART support, Moua also developed an orientation program for the Wat Tham Krabok refugees, in which they learned about liver cancer risk factors and the importance of hepatitis B immunization. In a separate program developed through AANCART, Moua serves as a case manager for Sacramento-area Hmong patients diagnosed with cancer. She makes sure the patients understand their illness and the recommended treatment. As needed, she also goes with them to their doctor appointments and acts as a patient advocate.

Empowering community organizations like the Hmong Women's Cultural Association to help themselves is central to the AANCART approach. So is an emphasis on cancer awareness and prevention.

Aid their own

photo of hmong tapestry
A Hmong embroidery depicts the flight from Laos to Thailand.

“When we engage community-based organizations to aid their own, train their own and perform research to help their own, we see the power of their commitment to their own,” says Kenneth Chu, chief of the NCI's Disparities Research Branch. “This is the secret to their success.”

Aeng Chang's three-day funeral was held over the July 4, 2004 weekend at a Veterans of Foreign Wars hall in South Sacramento. Local Hmong radio stations reported on the death of the first immigrant from Wat Tham Krabok, and announced his funeral. Outside the hall, stacks of 50-pound rice bags, brought by mourners as gifts to the family, flanked the entrance. Inside, Chang's clansmen beat drums and played the qeej, a traditional instrument made of six curved bamboo pipes attached to a wooden wind chamber. Sounds and smells of cooking emanated from a kitchen inside the hall, where women prepared rice, vegetables and meat for family and guests.

“It's very tragic,” a cousin said, standing next to a photo of Aeng Chang. “He never even got to see the apartment where his wife and children will live. But we are a large clan, and we will make sure his family is taken care of.”

AANCART will be there, too, to help ensure Chang's children, and others in the new generation, are armed with the information they need to protect themselves from the leading killer of Asian Americans.