Delaware is shrinking racial gaps in cancer death. Its secret? Patient navigators
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Sussex County, in the heart of southern Delaware's poultry-farm country, is home to many people like Michelaine Estimable, a 62-year-old native of Haiti who came to work on the factory lines of a chicken-processing plant.
But Estimable hasn't worked in two years, because of a leg injury that made it impossible for her to drive. Now, she relies on family members she lives with to get rides to medical appointments — one of the logistical headaches that's kept her from scheduling her mammogram for the past year.
Luckily for her, she's getting some help this year accessing preventative care from the state of Delaware. At the clinic where she gets primary care, she meets with Margarette Osias, a patient navigator for the Delaware Breast Cancer Coalition, who sets up shop here every Tuesday, hoping to find people in the community due for mammograms or other cancer screenings.
Osias schedules exams for patients, sends them reminders, and arranges rides for them to get there. A bilingual Haitian Creole speaker herself, Osias also deals with insurance — or even goes with patients to appointments to serve as a translator.
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Whatever obstacles the patient faces, "I am basically the connection between that individual and receiving that care," Osias says.
Patient navigators like Osias play a critical role in how the state of Delaware has reduced its cancer death rates, and narrowed — even eliminated — racial disparities in some forms of cancer. Both are high priorities for the Biden administration, which last month relaunched the Cancer Moonshot initiative, pledging to cut cancer deaths in half in 25 years and address persistent disparities in screening and treatment among people of color. Nationally, cancer kills Black people at higher rates than other groups.
Delaware's approach to cancer care stands out in the U.S. Two decades ago, the state had one of the highest cancer death rates in the country, so it used funds from the 1998 tobacco settlement to set up universal cancer screening and treatment for its residents. Its Screening for Life program will pay for all cancer screenings and, if cancer is found, will also cover up to two years of treatment — even for residents who are undocumented, have no insurance, or earn up to 6.5 times the federal poverty rate.
Now, that program is a model for addressing racial inequity in health care.
But access to screening and treatment can only help if residents like Estimable, who's lost a sister and a cousin to cancer, know about it — which is where patient navigators like Osias come in.
Every five years, the state identifies zip codes where screening rates run lowest. Navigators then fan out across grocery stores and laundromats in those communities, dropping flyers, setting up booths, and meeting with religious leaders. They arrange mobile screening vans to factories and other workplaces during work hours.
The process is neither quick, nor easy; it takes time to be seen and develop a rapport with people who have a distant or skeptical view of the medical system, says Mary Jo Vasquez, another patient navigator.
People will often approach only after seeing her multiple times, at their church, or where they shop. "They need to trust you," she says. "They have to learn that we're there for them, that we want to help them and that we're not going to abandon them."
Having patient navigators on the front line is essential, says family nurse practitioner Nadya Julien.
Julien opened Tabitha Medical Care three years ago, and started working with navigators like Osias. The clinic serves mostly her fellow Haitians, as well as some Latino immigrants. She says many are illiterate and didn't grow up with preventative medicine back home, which puts them at especially high risk of getting late-stage cancers.
The role of navigators isn't just logistical, she says, they also reduce fears and help people feel supported through a scary and unfamiliar journey, whether it's screening or treatment.
"When you have the navigator that speak the language that's can schedule the appointment, that can go to the house and pick them up and also be there with them to translate it gives comfort," Julien says.
Delaware's progress against cancer inequities has been slow and steady, and not without its challenges. The state's overall cancer death rate has gradually fallen from the 2nd highest among states in the 1990s to the 15th highest. Black men's improvements stand out: From the period of 2003-2007 to that of 2013-2017, the death rate from all cancers declined 26% for non-Hispanic Black men in Delaware, compared to a 15% decline for white men.
The success varies by cancer. The state's colorectal cancer mortality rates declined 37% among Black men in that time, and compared to 20% for white men. On the other hand, death from breast cancer only decreased by 3% among Black women compared to 15% for white women in that same period.
And a new challenge emerged in the pandemic: screening rates dropped off, temporarily hampering outreach efforts, so — like many other places — the state is now focusing on making up for lost ground.
But solving shifting challenges has always been a big part of navigators' work. Through trial and error, they've discovered they get fewer no-shows if they conduct free screening events on Thursdays, instead of Fridays, for example. They've learned to confirm appointments by text instead of by phone, after noting texting helped cut back on confusion and missed appointments.
Learning and tweaking the program like that has helped remove more roadblocks to care, says Stephen Grubbs, a medical oncologist and a founding member of the advisory council of the Delaware Cancer Consortium, which developed the state's approach.
"This program has been so successful I think because it's built on data and evidence," Grubbs says. The state didn't just screen more people, it also got them into earlier treatment, which ultimately saved lives, he says: "The final end point was, did we change mortality? And the answer was yes. And that's where you've got to get to. If you don't get there, the other stuff really doesn't matter, does it?"
Grubbs says it helps that the economics of the program work, too. Catching cancers earlier means less invasive, less costly treatment with better outcomes which, in turn, helps reduce overall cancer costs. All that is possible, he says, because of patient navigators.
"We took the barriers down, the navigators grease the system and made sure it all flowed through — that's exactly what it was," he says.
The state now hopes to build on its success, getting more funds to hire more navigators to target other cancers.
Delaware benefitted from having a unified approach, with support from politicians, physicians, community health centers and patient advocates, says Karen Knudsen, CEO of the American Cancer Society. "Having a state cancer plan is something they embrace, and that 20 years of work is starting to bear fruit," she says.
The state demonstrated the importance of patient navigators, who now play big role in cancer care nationally.
"Everybody knows it's the right thing to do," Knudsen says. "And I think there's a good, strong business case for it as well because of the lower cost of care for patients who are navigated."
The problem, she says, is insurance doesn't cover navigation services, which means cancer treatment centers or nonprofits like hers have to fund the cost.
She says she hopes that will change, especially after she spoke to President Biden last month at the White House's Cancer Moonshot announcement.
"He did not specifically talk about navigators using that word, but he did talk about eliminating disparities and increasing access," she says. "What I hear when I hear that, I hear "navigation."
Back at Tabitha Medical Care, after patient navigator Margarette Osias completes scheduling her mammogram, she tells Michelaine Estimable she will call her and send her a text message to remind her.
Then, as she does with every patient she sees, Osias turns to Estimable to ask her to help spread the word: "If she goes to a church or if she's in the community, if she can share that information with maybe other women that she can let them know that they can come."
Will she do that?
"Yes," Estimable answers emphatically. "Yes."
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