It was a coming together of cultures — Indigenous scholars from the Lakota, the Lummi, the Diné (Navajo) and other tribes; academic researchers from Fred Hutchinson Cancer Center, the University of Washington and elsewhere; representatives from community organizations across the state.
It was a merging of methodology, as well, with metrics and statistics and data points on a screen. But the science at this year’s Pathways to Equity Symposium at Fred Hutch was interwoven with stories and history, even song.
“Storytelling is teaching and it is healing,” said artist, educator and storyteller Roger Fernandes, of the Lower Elwha S’Klallam Tribe, in his opening blessing. “Your spirit needs stories; your heart needs stories; the people in your life — they need stories, too.”
Fernandes shared a traditional story of how stinging nettle saved the first people of the Puget Sound, a parable about overcoming fear by standing together, listening to the wisdom of dreams and learning from the land and nature. Keynote speaker Dr. Donald Warne, of University of North Dakota, shared stories, too, including the story of his Oglala Lakota grandmother, who died of advanced lung cancer without ever receiving treatment, a victim of bureaucratic red tape and a broken system.
“There’s no oncology program within the Indian Health Service,” said Warne, director of UND’s Public Health Program. “To be eligible, you need to be referred from your home state. But she’d moved from South Dakota to live with us in Arizona. She couldn’t enroll in Medicaid because we couldn’t prove how long she’d been there. And she was a full-time mother and grandmother so she wasn’t on Social Security or Medicare. She died before ever seeing an oncologist. This is just a terrible inequity. This is criminal.”
Health inequities like this, experienced by Indigenous peoples for decades, was a key focus of the half-day symposium held May 19 on the Hutch campus (and virtually), an annual event sponsored by the Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium.
Indigenous academicians and educators also shared important solutions, including coping mechanisms, decolonization tactics and effective strategies for bringing about changes in both policy and entrenched systems like medicine and academia.
“If we wait for the external world to create programs to meet our needs, we’re going to be waiting a long time,” Warne said. “We have to create it ourselves. We also have to have the courage to stand and fight for what our people need. Their lives literally depend on it.” Read more about the importance of Indigenous representation in research and cancer care
Dr. Jay Mendoza, director of the Consortium’s Office of Community Outreach & Engagement, kicked off day with an update on the OCOE, which will now be serving communities throughout Washington state instead of just 13 counties around the Puget Sound.
“That’s 39 counties and more than 7.6 million people, 30% of which are from racial and ethnic [minority] populations,” he said.
The OCOE provides training and research grants to community groups, operates the satellite Center for Community Health Promotion office in rural Eastern Washington, and offers educational events and podcasts. It also collaborates with clinical and community partners to offer other programming such as health screenings to people in medically marginalized communities, who often have worse cancer outcomes than people who have easy access to medical care.
To accommodate this recent growth in the geographic area it serves, the OCOE has hired one new community health educator for the Spokane area, with a second to come. A satellite office will open in a new health sciences campus there in July.
“Ten percent of the people in this state live in poverty,” Mendoza said, sharing priorities for OCOE’s future work in this larger, more diverse catchment area. “Six percent are uninsured. Indigenous populations have the highest cancer mortality in the state and Black populations with colorectal or prostate cancer have higher rates of mortality, as well. This is where our resources and support need to go; this is where our attention needs to be so we can tackle these inequities.”
He also announced new video training modules for the Recruitment and Retention Resource, a new service of the OCOE which provides Consortium researchers with training on how to better recruit underserved populations to participate in research studies. The new videos will be available in July.
In his keynote, Warne spoke of the historical trauma of the Indigenous people of the U.S. and Canada, sharing stories of smallpox-ridden blankets, forced relocations and mandatory boarding schools where disease, abuse and death were commonplace.
“A lot of our history is very difficult, challenging to think about and talk about, but we need to understand the truth of history even when it makes us uncomfortable,” he said. “We’ll never get to equity unless we walk through truth.”
He pointed to the loss of Indigenous food systems and sovereignty, replaced by government USDA commodities laden with sugar and bleached flour. Fry bread, he said, is thought of as traditional Indigenous food, but it’s not. It was simply people making do with their commodities, but at a cost.
Poor nutrition, air and water pollution and other adverse life experiences affect the way genes are turned on and off — not only for the individual who experiences these conditions, but also for their children and grandchildren — via a phenomenon known as epigenetics.
“What is the nutritional epigenetic outcome of these kind of food programs across generations?” Warne said. “Look at the potential impact on diabetes, obesity and cancer. This has not been studied, but it needs to be.”
While some researchers believe Indigenous health disparities can be explained away by genetics, Warne believes compounded trauma and stress, including adverse childhood experiences, have had a profound effect on Indigenous health outcomes.
“Living within toxic stressful conditions puts you at risk for all kinds of chronic disease,” he said. “We need to better understand what the influence is of toxic stress.”
Warne also spoke of the need to recognize and establish Indigenous medicine as a clinical science.
“That’s the next step for Indigenous health,” he said. “We used aspirin in its traditional form — willow bark tea — until Bayer ‘discovered’ it. We need to have Indigenous medicine as a clinical science. To have residencies in Indigenous medicine. Ultimately, we need an American Indian school of health sciences.”
A panel of Indigenous scientists and public health leaders, led by OCOE community health educator for Indigenous populations Craig Dee, also shared ways to conduct science while maintaining tribal sovereignty. The panel stressed the need for tribal approval before starting to collect data, ask questions or publish scientific papers; the importance of training for researchers from Indigenous communities; and the need for collaborative approaches with Indigenous organizations.
“Tribal sovereignty means we’re stewards of our own data,” said Dr. Rosaline “Rose” James, a member of the Lummi Nation and director of evaluation and research at the Urban Indian Health Institute in Seattle. “Native people need to be involved in every step of the partnership, including asking the questions that matter to the community.”
They also discussed decolonization, the undoing of colonialism and its trappings. This may mean rejecting the traditional “colonial” view of what constitutes family or first-degree relatives when a student needs to return home for a family funeral. Or it may mean a reconsideration of what constitutes proper training and education for a scientist (academic degrees vs. contributions in community engagement).
“We have a long way to go in changing higher education,” said Dr. Bonnie Duran, a member of the Opelousas and Coushatta tribes and researcher within the Indigenous Wellness Research Institute at the UW. “It’s still a tool of colonial ideology. The National Institutes of Health is trying to decolonize and all of us are trying to decolonize. And we’re seeing it start to happen. Community-based participatory research is an excellent first step.”
But while there has been progress in certain areas, there is much room for improvement, particularly when it comes to representation. Academic leadership consistently lacks diversity.
“There are no American Indian deans of medical schools or schools of public health,” Warne said. “I’m 50% of the American Indian associate deans of medical school in the entire country. That’s not a pat on the back. It’s an indictment on the field.”
Recognizing tribal knowledge and Indigenous researchers is also crucial. Currently, the National Institutes of Health doesn’t track the race or ethnicity of its investigators.
“Research that addresses needs of Native populations needs Native researchers,” said James. “Our people have advised this for decades but we keep hearing, ‘I’m not able to find anybody who is qualified.’ I think at some point, you just have to create the systems and stop coming up with reasons why you can’t.”
Speakers also discussed other ways to break down health disparities, including supporting workforce development initiatives, creating elders-in-residence programs where older people are invited to be part of medical training of younger students, and creating a “pathways program” for young students to go on to medical school (particularly young men of color).
Dr. Allison Kelliher, an Alaska Native and researcher at University of North Dakota, brought up the importance of recognizing and celebrating local champions and achievements.
“We need to acknowledge our local resources and our local champions who are often overburdened, but identifying and supporting those folks,” she said.
Toward that end, the symposium took time to recognize two health equity champions for their work over the years.
The Cancer Health Equity Research Award, given to an outstanding Consortium scientist who has made significant contributions to health equity work, was presented to Dr. Barbara Baquero. An associate professor in Health Systems and Population Health within the UW School of Public Health, Baquero was honored for her willingness to “move the science forward in a way that always reflects the community voice,” said Fred Hutch professor emeritus Dr. Beti Thompson in her award presentation.
Thompson, the former head of the Hutch health disparities research center, also presented the Beti Thompson Community Health Champion Award, given to a community advocate, or “someone who works night and day and often goes unrecognized for their work in the community,” as she put it.
This year’s award went to Ben Young, a prostate cancer survivor and advocate with C3, Communities of Color Coalition, who partners with Consortium researchers to provide better cancer screening, care and outcomes for the African American community.
“Ben’s work is grounded in the social determinants of health,” Thompson said. “Social factors like racism, stigma, historical trauma; housing, income and food insecurity. He is well aware that it is difficult to focus on cancer prevention when such disadvantages exist.”
Thompson said she appreciated attending the symposium, even though she is now retired.
“I learned a great deal more than I knew before,” she said. “It just reaffirms for me the importance of the work we do in dealing with different populations who experience health disparities.”
On April 1, 2022, Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance became Fred Hutchinson Cancer Center, a single, independent, nonprofit organization that is also a clinically integrated part of UW Medicine and UW Medicine’s cancer program. Read more about the restructure.
Diane Mapes is a staff writer at Fred Hutchinson Cancer 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 email@example.com. Just diagnosed and need information and resources?
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