Why do some cancer patients live and others die? Sometimes, yes, it’s the cancer itself. But other times it has more to do with whether the patient is insured, or speaks English or trusts the person in the white coat who’s telling them they need treatment.
Researchers have long known that inequities in health care can make the difference between life and death for many patients. So why do health disparities continue to exist and what can we do about them?
Dr. Beti Thompson and a quartet of community health advocates addressed these questions Friday at the Science of Community Equity Symposium at Fred Hutchinson Cancer Research Center, sharing findings on health disparities causes and countermeasures with researchers, doctors and patients.
Thompson has spent the past 30 years as a public health researcher at Fred Hutch and the University of Washington working on behalf of the medically underserved through the Health Disparities Research Center, or HDRC, and its many community outreach projects.
According to Thompson, most cancer health disparities can be traced to four factors.
Thompson illustrated this last point by sharing research on the Dutch Famine of WWII, which her mother, pregnant with Thompson at the time, lived through. Due to German blockades, thousands of people suffered from or died of starvation in a grim stretch from September 1944 to May 1945. Thirty years later, researchers looked at women who’d lived through the famine and found their rates of breast cancer had increased substantially, some by as much as 48 percent.
“Things that happen to us in early life can affect what happens to us in later life,” she said, pointing to another study on high cancer rates in Holocaust survivors. “There’s some evidence that environmental stressors trigger norepinephrine and cortisol, which are thought to reduce the immune response and thereby may be increasing or accelerating cancer progression.”
But long-term exposure to extreme events is still happening today, Thompson said.
“Think about this in terms of our populations who live in poverty and areas that are filled with physical violence and hate,” she said. “People who have suffered sexual abuse and other traumatic abuse; people who live in constant depression and anxiety — it’s no wonder that they may have some of these effects … Studies demonstrate that living in an environment of hate has an effect on your health.”
What can we do about this complex mix of factors that lead to health disparities?
“This is my mantra,” Thompson said. “Go in search of people, begin with what they know and build on what they have. If you want to change behavior of people who are underserved and oppressed, you need to work with people where they are. You can’t come in and do your typical non-Hispanic white research and hope that it’s going to make a difference.”
Thompson said working directly with the communities you’re researching is key, highlighting successful HDRC outreach with Latinos in Washington’s Lower Yakima Valley; African Americans in Seattle and Tacoma and the Somali community in Puget Sound. HDRC teams, for instance, discovered many people in Yakima Valley hadn’t gone in for colorectal cancer screening because they didn’t know enough about colons.
“We asked, ‘What would make you more aware?’ And they said, ‘If we saw a colon,’” Thompson said. “So we bought a giant inflatable colon that’s 20 feet long … And people loved it.”
More than that, out of the 300 fecal occult blood test kits they handed out to people 50 and older who visited health fairs featuring CASPER, the inflatable colon, 75 percent of those kits were brought in for screening tests — an extremely good result, according to Thompson.
Thompson said HDRC researchers don’t reinvent the wheel — if something is working, they’ll stick with it — and they also don’t do “helicopter research,” where scientists swoop in, get the data, and swoop out.
“We make sure people understand why we’re there,” she said. “They help us with all aspects of the research, they help us write papers and they always get the study results back.”
Thompson’s talk was capped by representatives from four community-based organizations who presented findings from recent HDRC-funded research collaborations designed to break down disparities in health care.
Bridgette Hempstead, founder of the African American cancer support group Cierra Sisters, spoke about using peer education to help members of the black community learn more about breast cancer.
Her “train the trainer” program recruited 14 women from Cierra Sisters who went on to educate more than 100 others from within their social networks about prevention and early detection.
“The [trainers] were so enthusiastic about what they learned,” Hempstead said. “We even had one man who was very excited to go back and share this information with his mother, his sister, his aunt and his girlfriend.”
Hempstead said their research showed it was quite feasible to train laypeople to serve as peer educators and that women who attended the workshop increased their breast cancer knowledge and communicated it to others.
“Now they know where to get mammograms, how to navigate through the system, how to talk to their providers and how to make a difference within their own network,” she said. “They can save somebody’s life. That’s what this is all about.”
Dr. Eun Jeong Lee, national director of the Senior Community Service Employment Program with National Asian Pacific Center on Aging (NAPCA) spoke about a project designed to overcome language barriers which can contribute to health problems for many older Asian Americans and Pacific Islands.
This program tailored a version of “Check. Change. Control,” a high blood pressure program developed by the American Heart Association, so it could be delivered to older Chinese, Korean and Vietnamese-American adults by multi-lingual counselors via phone.
The counselors checked in with 14 participants regarding their blood pressure and other health issues on a regular basis for four months.
“We haven’t done a full analysis yet, but I can say that many of the participants, particularly Korean participants, were taking care of their health by themselves and had no social support,” said Lee. “So they were very happy to receive phone calls from counselors and felt much less isolated.”
Heather Stevens of Sea Mar Community Health Centers presented her findings from a research project designed to increase colorectal cancer screening by creating more patient-friendly materials.
After gleaning advice from providers, health educators and patients, the researchers created a new culturally-sensitive and reading-level appropriate colorectal screening pamphlet, in both English and Spanish. They then tested the pamphlet’s effectiveness on 50 patients who came into a local Sea Mar clinic. The patients selected were all eligible for colorectal screening, but hadn’t yet received it. Twenty-five received the new pamphlet; 25 received standard materials.
“Our results showed that there was a significant increase in knowledge gained from our custom-made materials,” said Stevens. “It’s important to customize materials for the demographic that you’re serving.”
Suzanne Pak, director of community and behavioral health programs for the Korean Women’s Association, presented on a health equity project that focused on bringing more awareness to decision-makers in health social services, government agencies and health insurance companies about the high prevalence of stomach cancer in Asian Pacific Americans and Native Americans.
“Our specific aim was to improve early detection of stomach cancer among Asian Pacific Americans,” she said. “Oftentimes when you look at health disparity reports, you look at information based on race. But there’s actually a wide variation across different ethnicities in Asian Americans. With Korean Americans, the incidence is like eight times more than the white American counterpart. That’s an extreme health disparity.”
The researchers worked with an advisory committee of doctors, researchers, health agencies, government agencies, patient advocates and others, then went on to host a stomach cancer conference which attracted 120 health leaders. A pre- and post-conference survey of participants showed increased awareness about stomach cancers and a willingness to share that knowledge with others. Researchers also learned via participants that the biggest barrier to stomach cancer screening was the lack of a U.S. screening guideline (no guidelines means no insurance coverage so tests would be out-of-pocket for patients).
Pak and her team looked into the possibility of policy change, such as the creation of a national screening guideline for at-risk populations, but felt it was unfeasible at this time.
“I found out that it is really hard to get the U.S. Preventive Services Task Force to change a national guideline,” she said. “That makes patient education around early detection harder. You can’t just say, ‘Get screened after a certain age.’”
The symposium ended with a presentation of the Beti Thompson Community Health Trailblazer Award to Giselle Zapata-Garcia, supervisor of community outreach/engagement at Molina Healthcare, for her exemplary service to the Latino community.
Originally from Panama, Zapata-Garcia has more than 20 years’ experience helping to reduce health disparities in Washington state. Colleagues referred to her as "a true pioneer for her community" and a "tireless worker" with an "indomitable spirit and dedication to helping those in the community who have the least but really deserve the most."
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org.