Pathways Symposium explores lack of access to cancer screening and care

The mountains, valleys and islands of Washington state are renowned for their natural beauty. But for those dealing with cancer (or trying their best to avoid it!), these magnificent physical features can become chronic obstacles that stand in the way of cancer screening, diagnosis and care.

From frustrating ferry lines to months-long waiting times to lack of transportation, health insurance or health literacy, Washington residents living in rural counties, isolated islands, tribal communities, urban medical deserts and other medically underserved areas continue to struggle to have their health needs met.

That’s where Fred Hutch Cancer Center comes in, as part of the Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium. Fred Hutch and the Office of Community Outreach & Engagement, or OCOE, serves all of Washington state including those far-flung mountains, valleys and islands.

“The goal of a cancer center is to improve health and outcomes from cancer and if we don’t improve the health and outcome of everybody with cancer, we miss the opportunity to truly fulfill our mission,” said Thomas J. Lynch Jr., MD, welcoming patients, caregivers, clinicians and dozens of community health organizations to the OCOE’s Pathways to Health Symposium, held on the Fred Hutch campus May 13. Lynch holds the Raisbeck Endowed Chair.

“I’ve seen the community outreach and engagement we have in Sunnyside and Eastern Washington and in other communities around the state,” he said. “You are making a difference.”

The difference that community organizations — and the OCOE — make is more crucial than ever as federal cancer research funding levels remain uncertain. But as Fred Hutch cancer prevention professor emeritus Beti Thompson, said in her recorded greeting, "Disparities do not disappear just because they’re not recognized.”

The work of the OCOE, according to director Jay Mendoza, MD, PhD, “continues with even greater urgency. It continues unabated.”

What helps communities stay healthy?

But there are still significant and ongoing health needs in the state, according to data gathered by the OCOE for its annual Community Health Assessment Report.

Those needs include — but aren’t limited to — access to basic health, mental health and cancer care; preventive care (think screening and checkups); high health care costs; health literacy and social drivers of health such as education, affordable housing, fresh food and a stable environment.

Keynote speaker Karriem S. Watson, DHSc, MPH, CEO of the University of Illinois-Health Mile Square Health Center in Chicago, spoke of the importance of listening carefully to the various communities in the state and making sure research and resources offered are in keeping with what’s needed – and wanted.

“Just because an IRB [Institutional Review Board] approves a study doesn’t mean you can do it in our community,” he said. “Not without our community board’s permission. Research is not my day job. My primary job is getting people the care and services they need: tobacco cessation, help with diabetes and breast cancer screening, access to food, to safe walkable pathways, access to childcare. That’s what came out of our needs assessment.”

The question is “how do you couple that with research that’s responsive to the needs of the people?” 

Representatives from different Washington state community health and cancer centers also highlighted programs that offered real relief.

“Distance is an issue in my area,” said Matt Schanz, administrator of the Northeast Tri County Health District serving Ferry, Pend Oreille and Stevens counties in Eastern Washington. “We’ve had a donation-based travel voucher program for years, but in 2023, we were able to secure additional funding to offer it to people not just in treatment but those going in for diagnostic screening. We’re also trying to find ways to sustain this funding outside of grants.”

Ludy Villegas, population health coordinator for Sea Mar Community Health Centers stressed the importance of patient navigators to help people through an oft-confusing health-care system.

“We need more patient navigation and more diagnostic follow-up,” she said. “We need to focus on transition points and improve the continuity of care; we lose track of people after treatment ends. We also need stronger partnerships with local hospitals and cancer centers. And we also need more mobile screening units and more options for patients like weekend clinics.”

Better access, better outcomes

A panel of patients and caregivers offered personal stories and insights illustrating the important ties between access and outcomes.

Lori Durham, of Bremerton, Washington, diagnosed and treated for both breast and ovarian cancers, said when she discovered she had cancer, she also learned she didn’t have insurance — at least not a policy that was accepted by all of her providers.

“There were people out there who wouldn’t take it,” she said. “There were some things I really had to fight for. I had to jump through a lot of extra hoops. But I knew what to do and how to jump through those hoops. There are so many people who don’t have a clue what to do. They get a ‘No,’ and that’s it.”

Leticia Chavez, of Sunnyside, who acted as caregiver during her mother’s breast cancer treatment and continues to care for her father, currently undergoing aplastic anemia treatment at Fred Hutch, spoke of the immense need for education around cancer and cancer prevention.

“People hear the word cancer, and they think they’re going to die,” she said. “They need to learn that that was many years ago and now, there are ways to treat it. There is still such a stigma around it that people won’t get screened until it’s too late. That needs to change.”

Debbie Ceballos, a breast cancer survivor from Spokane, said she was faced with provider shortages — and attitude — when she sought care following her diagnosis.

“It took me a month to get into to see my provider after a mammogram found cancer,” she said. “I was flabbergasted at that wait, especially not knowing if it was aggressive or not. Then when I finally got in, I was chastised for the first hour because I was obese. I didn’t hear anything about my cancer until the end of the appointment. My daughter, who is an RN, was on the phone listening. Afterward, she said ‘Go somewhere else.’ These are just some of the mountains and valleys I went through.”

Her message to other people experiencing dismissive or insufficient care?

“You can always get another opinion,” she said, praising the care she received at Fred Hutch, which included patient navigation and something even more important: kindness, compassion and hope. “I wouldn’t be here if I hadn’t.”