Cancer Prevention in Every Language
Aug 21, 2019 Diane Wedner
Communities most at risk for cancer are among those receiving the least medical attention. Cedars-Sinai investigators are using a culturally tailored approach to reduce disparities in cancer prevention and treatment—from Koreatown to LGBTQ populations.
Until her Medicare coverage kicked in five years ago, Myong Shim Lee visited her family doctor only when she was really sick. She lacked health insurance for most of her adult life, so she never considered mammograms, colonoscopies or gynecological exams. Her doctor, who also treated her extended family, did not discuss preventive care and never mentioned the possibility of cancer. Basically, she says, she had no clue.
“The only time people in my community talk about cancer is if a friend has a pain and the doctor finds something wrong,” says Lee, 70, who emigrated from South Korea to Los Angeles in 1977. Health information trickles down secondhand, she says, if the friend survives the disease. “People gossip about someone having cancer, but it’s very hard to get correct information before an actual diagnosis.”
That culturally ingrained health behavior is common in many underserved populations—groups defined by race, ethnicity and socioeconomic status. Its toll is high. Fear and embarrassment as well as a lack of financial resources, health insurance, information and transportation act as barriers to accessing care. These populations exhibit higher rates of cancer, chronic illnesses and deaths compared with their peers in other groups, says Robert Haile, DrPH, MPH, the Cedars-Sinai Chair in Cancer Population Health Sciences. The Research Center for Health Equity, which he directs, is tackling the problem in Southern California communities, neighborhood clinics and Cedars-Sinai’s laboratories.
Narrowing the health disparities gap has taken on particular urgency as the U.S. population has become more diverse. In 2016, 4 in 10 people living in the U.S. were people of color. That number will jump to more than half the population by 2050, according to the U.S. Census Bureau. The underserved make up a disproportionate share of uninsured people, highlighting the urgency for action.
“There is a tremendous need to bring current, accurate information about health risks and prevention to underserved communities,” says Haile, a national leader in population studies. “Once we determine why certain groups don’t get screened for colon and other cancers, for example, we can be smart about how to address that problem.”
That people lack information, understanding and access to cancer care is deeply unjust. For me, correcting those inequities is a matter of justice.”
—Zul Surani, associate director of the Research Center for Health Equity
“That people lack information, understanding and access to cancer care is deeply unjust,” says Zul Surani, associate director of the research center. He lost his mother to cancer, prompting his career commitment to reach those most in need of cancer information. “For me, correcting those inequities is a matter of justice.”
Closing the health-disparity gap also has economic benefits. The Kaiser Family Foundation recently reported that healthcare inequality accounts for about $93 billion annually in excess medical care costs and $42 billion in lost productivity in addition to the economic losses due to premature deaths.
Cedars-Sinai’s research center already has sprung into action in Koreatown, Pico-Westlake, and other communities in Los Angeles County and across Southern California. Surani and his outreach team hold educational health workshops for neighborhood groups in churches and community centers. The team also arranges cancer screenings at free clinics.
The timing of the research center’s efforts comes not a minute too soon for Lee and her husband, Ki Tae Lee, 82. Concerned about their health—particularly about cancer, as they age and as friends confront the disease—the pair is eager to gather all the accurate health information they can. And then share it.
“We spent most of our lives not talking about cancer with anyone,” says Myong Shim Lee, now an information warrior. “My primary care doctor always says, ‘You’re okay, you’re okay,’ rather than discussing test results and answering my questions. I wanted answers.”
So she got them. In November, the Lees headed to Los Angeles Onnuri Church in Koreatown where, Myong Shim Lee says, the research center’s cancer-education workshop changed her life. She and her husband assiduously took notes as Dong Hee Kim, a research center community outreach coordinator, talked frankly—in Korean—about cancer risks, prevention, treatments, screenings and clinical trial enrollment. The attendees also got one-on-one advice about health insurance.
The Lees now get regular cancer screenings, and Myong Shim Lee preaches the gospel of cancer prevention to others in her senior social groups. She also continues to educate herself about the benefits of nutritious foods and exercise.
Once her health enthusiast’s engine was revved, she and her husband decided to enroll in a three-month program to get certified as home healthcare providers, from which they graduated in May.
“In my whole life, this is the most important decision I’ve made: to learn about wellbeing, aging well and even dying well,” she says.
The Koreatown seminars were arranged by Surani along with Jeong Yup Lee, senior pastor of Onnuri Church. Pastor Lee’s father, who died of lung cancer in 1995, wasn’t screened for it, nor did he talk about the risk of lung cancer with his family, despite a lifelong smoking habit, the pastor says.
Now in his Sunday sermons, Pastor Lee talks openly about the reasons for his father’s late-stage diagnosis and emphasizes a holistic approach to medicine. He tells congregants that both their physical and spiritual wellbeing are necessary to maintain good health. “The church looks to restore a person’s heart and soul, while the medical center looks to restore the person’s physical needs,” he says. “When we collaborate with Cedars-Sinai, we make something better than what we can do individually.”
Doris Terry regrets the information vacuum that surrounded her before her breast cancer diagnosis 15 years ago. To the busy, single, working parent, regular physical exams and health screenings meant time away from her kids and her job as a teacher’s aide. Women in her African American community rarely seek or share health information, she says. That’s why she ignored a lump in her breast for months, until finally asking a friend to examine it.
“She screamed at me to go to the doctor,” says Terry, now 59.
Still, one biopsy, two surgeries, several rounds of chemotherapy and radiation, and one attempted breast reconstruction later, Terry was determined to forget her cancer. She skipped follow-up appointments, steered clear of support groups, which made her feel uncomfortable, and learned only minimally about cancer. “If I had pain,” she says, “I took a Tylenol.”
Then, 12 years later, in 2016, struggling to breathe during a short walk, Terry checked into a local emergency room. Following tests, the doctor revealed that the cancer had returned, at stage 4, igniting worry and anguish all over again. Additional tests showed the cancer had spread to her chest, esophagus, several lymph nodes in her underarm and other sites.
Like Myong Shim Lee, Terry visited doctors only when she was ill. But after her second breast cancer diagnosis, Terry joined a support group. At the suggestion of one her friends there, she attended a joint Research Center for Health Equity/Susan G. Komen educational event at Cedars-Sinai in January.
“I immediately felt more comfortable with my own situation after hearing the Cedars-Sinai experts talk about helping myself with a good diet, exercise and supportive care, which I’m doing now,” Terry says. “It gave me a good feeling to talk to other women with breast cancer. We laughed a lot and shared information.”
Cancer Prevention in K-Town
Los Angeles County is home to the nation’s largest Korean and Korean American population. This growing community faces distinctive medical challenges—from increased cancer rates to lower-than-average screening levels. The new Research Center for Health Equity at Cedars-Sinai aims to close the healthcare gap for this and other underserved groups.
Several types of cancer have become more prevalent among the U.S. Korean population. Between the 1990s and 2005, prostate cancer, breast cancer and colorectal cancer all increased sharply in this group.
Koreans have the highest rate of stomach cancer of any ethnic group in the U.S. and are experiencing rising liver cancer rates. These disproportions are greater among first-generation immigrants.
Disparities among Koreans have become more pronounced, especially among those who are foreign-born, of lower socioeconomic status and living in areas with high ethnic concentration. Some 67% of the 226,000 Koreans in Los Angeles County are foreign-born.
Health behaviors linked to increased cancer risk among the U.S. Korean population include:
- Mammography rates that lag behind that of the general population
- Lower colorectal cancer screening rates
- Smoking cigarettes
Surani says that his team’s mission is to share reliable, culturally tailored information about cancer so participants “can feel they’re in control of their futures and their health.”
In December, the team arranged for Latinas to receive free breast cancer screenings at Clínica Romero in Downtown Los Angeles. In addition to its work with L.A. County’s Korean, Filipino, Latino and African American populations, the research center also plans to partner with the Los Angeles LGBTQ community, “which is deeply underserved,” Haile says.
The team analyzes environmental, cultural and genetic factors to understand disparities in cancer rates. For example, it is conducting scientific studies to find out why the incidence of liver cancer is increasing sharply in the Latino population and breast cancer rates are climbing significantly among Korean American women.
To detect early-stage colorectal and other cancers, they are also working on blood-based or “liquid” biomarkers that don’t rely on invasive procedures. The biomarkers may be useful for monitoring cancer recurrence and patient response to therapies. And the team is developing technologies to reach more people in multiple cultural settings and in a number of languages.
As for Myong Shim Lee, she remains dedicated to educating her peers. “My kids are grown, and I don’t have to fight with them anymore!” she jokes, and then turns serious. “I just want to fight cancer.”