Published on the first day of every month. Produced in collaboration with editors of the New England Journal of Medicine.

Healthcare Outreach in Ethnic Communities

A NextGen Pathways in Medicine Article

Annie, a hypothetical woman, is 34 years old and emigrated from China nine years ago. She and her seven-year-old daughter live in New York's Chinatown, where according to recent studies conducted by New York University School of Medicine, the infection rate of hepatitis B is 35 times higher than that found in the general population. [1] Her daughter attends a local public school and brings home scores of forms and packets distributed by her teacher everyday. Today, her daughter brings home not a field trip permission slip, but a health survey about asthma symptoms.

The diversity of the people, like Annie and her daughter, that make up the United States has become a national value that many people living in the United States praise. Diversity brings to the United States a rich mix of ethnic foods, traditional holidays, and a wealth of ideas. But diversity also brings to the United States, as many state and municipal health departments are slowly discovering, the disease burdens of other countries. These diseases have such low prevalence in the general population that they have disappeared from the thoughts of the average American, but they are often endemic in the countries people have emigrated from. As the population of ethnic communities continues to rise, these diseases can quickly become potentially crippling concerns for US healthcare systems. The critical task, then, is to diagnose and treat the current population in order to avoid further spread within the ethnic communities and into the general population.

Diagnosing and treating ethnic communities is not easy. Factors such as the language and culture of the ethnic community and the details of specific diseases as relevant to the ethnic community weave a complex web that physicians and community outreach workers must navigate in order to effectively treat the disease. Hepatitis B and asthma within the Asian and Pacific Islander (API) community illustrate important approaches and common difficulties in treating ethnic communities.

Liver cancer, often caused by a chronic hepatitis B infection in the API population remains one of the deadliest cancers unless treated early. According to Census data, the API population is the fastest growing ethnic community in the country, with most of the API community being adults that are foreign born and recent immigrants to the country. API are a mere 4% of the US population, but surprisingly comprise 60% of the 1.3 million people in the US that are chronically infected with hepatitis B. [2] Chronic carriers of the hepatitis B virus (HBV) have an increased risk for developing cirrhosis, liver failure, and liver cancer. [3] While most chronic carriers of HBV will not develop liver complications, 15-40% of chronic carriers will experience the unfortunate progression to cirrhosis, liver failure, or liver cancer. Like HIV, hepatitis B is transmitted through exposure to bodily fluids that contain the virus including perinatal, percutaneous, and sexual exposure. In countries where hepatitis B is endemic, the virus is usually transmitted from mother to child at the time of birth. Available treatment for chronic hepatitis B helps a person clear the infection by reducing the viral load. Treatment is usually in the form of antivirals and immune modulators. Most importantly, patients with chronic HBV must undergo life-long monitoring of the liver to prevent a progression to liver cancer and other lifestyle changes to prevent further spread. The HBV vaccine, usually required in order to attend school in the United States, given in three doses, is a highly effective prevention measure against HBV.

Chronic hepatitis B and the liver cancer it causes represents the greatest health disparity between Asian and white Americans, according to Dr. Samuel So, the Lui Hac Minh Professor of Surgery at Stanford University School of Medicine and director the Asian Liver Center. He began his involvement with hepatitis B and the API community after noticing that "most of the Asians I saw dying from liver disease had chronic hepatitis B-induced liver failure or cancer, which was extremely uncommon in other US ethnic populations." Since hepatitis B affects a small percentage of the general population, chronic HBV in API receives little attention in the professional medical societies and public health communities. As Dr. So explains, common misconceptions about hepatitis B exacerbate the health disparity. Since hepatitis B is transmitted via the same pathways as HIV, many believe that hepatitis B is an infection you get from leading a "dirty lifestyle" including unprotected sex and the sharing of needles. However, most of the infected members of the API community are unknowingly infected at birth from an infected mother or during childhood from close contact with other infected children or family members.

The most complicated—and yet most crucial—intervention point for treating hepatitis B-induced liver complications within a community lies in diagnosis. As Dr. So explains, "many physicians treating the API community and the API population themselves are unaware of the fact that many [carriers of HBV] have no symptoms and can have normal liver blood tests until they develop advanced liver cancer or liver failure, of the importance of doing a simple blood test to screen all API for chronic HBV, and of the need for regular life-long screenings for liver cancer." Dr. So further elaborates by saying, "Most adult APIs have not been tested or vaccinated against hepatitis B., and so although Asian Americans have good records of childhood immunization rates, many API adults are at risk for vaccine preventable diseases like hepatitis B. Understanding the cultural influences on health behaviors is vital for eliminating these health disparities and maintaining positive immunization trends." [4] Thus Annie, our hypothetical Asian American, could be chronically infected by HBV and remain completely unaware of her condition until it is too late.

"Hepatitis B is a common disease that has bad outcomes without treatment, but good outcomes with treatment," summarizes Dr. Marion Peters, a hepatologist at the University of California San Francisco School of Medicine who sees patients with all sorts of liver diseases including Hepatitis B. One of major difficulties that Dr. Peters cites in treating hepatitis B within the API community is access to medical care. Dr. Peters explains that many patients will want to go to their own doctors and often do not want to see a liver specialist or even know that they can. An ethnic population also suffers from access to drugs for treatment. Dr. Peters notes that the cheapest drug for hepatitis B treatment, Lamivudine, has the highest resistance (20%). The ethnic population often does not get the best care or the best drugs. According to Dr. Peters, unfortunately it is often the "people who need it most that have least access to health care." In addition, the frequency of medical screenings and screening standards are different in other cultures and countries making it difficult to stress the importance of screening for hepatitis B and consistent monitoring of the liver if diagnosed with chronic hepatitis B. Dr. Peters' number one recommendation in improving the treatment of hepatitis B within the API community is education. From Dr. Peters' experience, "people act on their knowledge."

Fortunately, there are a number of national and regional campaigns that serve as an important launching point in treating hepatitis B in the API community: Think B, the Hepatitis B Initiative, and the many programs available through the Asian Liver Center. The major goal of many of these campaigns is outreach and education. The Asian Liver Center has the ambitious goal of the global eradication of hepatitis B through awareness, education and outreach, immunization and treatment, and advocacy. As Dr. So explains, "We find that awareness and knowledge about hepatitis B is poor in the Asian American population and healthcare providers."

To educate the API population and healthcare community about hepatitis B and liver cancer, the Asian Liver Center has a variety of programs that distribute culturally sensitive and linguistically appropriate materials, including free brochures for the community and healthcare providers, public seminars and lectures for healthcare providers and community members, physicians' guides on hepatitis B (available on the CDC website), public service announcements and advertisements in ethnic media, and a documentary about hepatitis B and liver cancer. The center also actively participates in community events, advocates liver cancer research and prevention, advocates the development of national CDC guidelines for routine hepatitis B screening of all recently immigrated API and their children, advocates guidelines for the treatment and monitoring of liver cancer for chronic hepatitis B patients, and has spearheaded the development and introduction of the first National Hepatitis B Act in the US Congress (2006). The Asian Liver Center also offers free HBV screenings and access to low cost vaccinations.

Dr. So emphasizes that the most important point in outreaching to a community is "to know your particular target ethnic group." [5] In order to effectively provide Annie with materials about hepatitis B, community outreach workers must pinpoint how Annie normally receives her information and learn about her most comfortable language and her ethnic values and culture. Since many API adults are foreign born, they don't speak English as their first language. Most of them get their information from ethnic radio and TV stations, ethnic newspapers, and ethnic magazines. Dr. So stresses, "You should take time to learn about the language, ethnic values, beliefs, and culture of the particular ethnic group." [6] As an example of seemingly trivial details that can impact the effectiveness of an outreach campaign, Dr. So illustrates that in some cultures, certain numbers should be avoided due to widespread cultural superstitions, "If you post a phone number ending in a string of 4s in the Cantonese/Chinese community, it would be a big mistake since '4' means death or dying and calling that number may be perceived as bringing bad luck." [7] All in all, what works for one community may not work for another, thus it is imperative to understand the cultural needs and nuances of the target ethnic community.

Another important point to consider when outreaching to a community is language. When studying environmental health in low income and minority communities in Boston's Chinatown, Dr. Doug Brugge, Associate Professor of Public Health and Family Medicine at Tufts University School of Medicine, stumbled on issues of language, culture, and literacy that affect the understanding of asthma, a chronic disease of the respiratory system. In a survey of elementary schools to find the prevalence of asthma, he realized that there were difficulties in the translation of the word "wheeze," a recognizable symptom of asthma. [8] This was not due to different dialects, as Dr. Brugge explains, "different fluent Cantonese speakers had different opinions on it."

According to the 2001 California Health Interview Survey, Asians were significantly less likely to have been diagnosed with asthma than all racial/ethnic groups except Hispanics. In our hypothetical situation, if Annie is unable to grasp the concept of "wheeze," she will not accurately be able to answer the health survey about her daughter. Perhaps the low incidence of asthma within the API community is a result of low reporting due to the lack of understanding of the concepts of asthma.

What began as an air pollution study was quickly transformed into a health communication study that revealed some surprising results. In a further study, Dr. Brugge measured the understanding of the concepts of asthma in parents and children through a simple questionnaire of true and false questions across a range of ethnic groups. The results showed that Asians within Boston Chinatown had the lowest knowledge of asthma. [9] After additional studies, Dr. Brugge now emphasizes the importance of language in delivering healthcare, "If you can't understand, you can't disagree; there's no discussion. Language is fundamental and basic, where discussion is secondary to a full line of communication." Dr. Brugge also stresses the importance of competent translators and interpreters who are fluent, though he questions the standard qualifications of fluency given the wide range of dialects and fluency in medical knowledge necessary to be a competent interpreter. Like Dr. So and Dr. Peters, Dr. Brugge also recommends education as the most important aspect in treating an ethnic community and as Dr. Brugge states, one must "identify the most important messages to convey" to the ethnic community.

To ensure that Annie and her daughter are not lost in the bustle of New York as a part of a "forgotten minority" in healthcare, the US healthcare system must effectively target particular ethnic communities with an arsenal of culturally sensitive and linguistically appropriate materials and a deep knowledge of the ethnic values and problems each ethnic community faces. Both Dr. So and Evelyn Lilly, director of the Hepatitis B Initiative, encourage everyone to get involved in the many facets of outreach and education. Lilly was always aware that hepatitis B disproportionately affects Asians and believes that through outreach she can make a meaningful contribution. Dr. So often reflects on the personal gratification he feels through his work, "When I talk to people, I'm constantly reminded about how little the public knows about health issues. But, every time a person learns from me, I feel like I'm making a difference, no matter how small." [10] 

Eva Luo is a writer for the Next Generation and a member of the Harvard Class of 2008.

Works Cited

1. Perez-Pena, R., and Santora, M. (May 2006). Hepatitis risk for East Asians in New York. The New York Times.
2. So, Samuel. (May 2006). Eliminating Health Disparities: A Satellite Broadcast for Outreach Workers: Asian/Pacific Islander Outreach. <liver.stanford.edu>
3. Lok, A.S., and McMahon, B.J. (2007). "AASLD practice guidelines: Chronic hepatitis B." Hepatology 45: 507-539.
4. So, Samuel. (May 2006). Eliminating Health Disparities: A Satellite Broadcast for Outreach Workers: Asian/Pacific Islander Outreach. <liver.stanford.edu>
5. So, Samuel. (May 2006). Eliminating Health Disparities: A Satellite Broadcast for Outreach Workers: Asian/Pacific Islander Outreach. <liver.stanford.edu>
6. So, Samuel. (May 2006). Eliminating Health Disparities: A Satellite Broadcast for Outreach Workers: Asian/Pacific Islander Outreach. <liver.stanford.edu>
7. So, Samuel. (May 2006). Eliminating Health Disparities: A Satellite Broadcast for Outreach Workers: Asian/Pacific Islander Outreach. <liver.stanford.edu>
8. Greenfield, R., Lee, A., Tang, R., and Doug Brugge. (2005). "Screening for asthma in Cantonese-speaking immigrant children." BioMed Central Public Health 5: 48-58.
9. Chen, C., Brugge, D., Leung, A., Finkelman, A., Lu, W., Rand, W. (2004). Acculturation and asthma among Asian Americans. AAPI Nexus.
10. So, Samuel. (May 2006). Eliminating Health Disparities: A Satellite Broadcast for Outreach Workers: Asian/Pacific Islander Outreach. <liver.stanford.edu>

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