Disease hits black and brown people harder. Same for indigenous people, folks in rural areas, members of the LGBTQ community and others who are medically underserved.
It’s what the research shows and what many of us have experienced firsthand.
These disparities aren’t the result of genetic predispositions, but societal ones. It’s the person’s socioeconomic status, their insurance and immigration status, the neighborhood where they live and whether they have access to (and can afford) health care, nutritious food, social support. It’s how people treat them based on their looks or their heritage. These are the things that truly dictate who gets sick and who dies.
It’s true for cancer, for cardiovascular disease and diabetes and in these times, for COVID-19.
“The disparities we see in COVID-19 are very consistent with most forms of cancer and most health conditions in the U.S.,” said Dr. Christopher Li, an epidemiologist with Fred Hutchinson Cancer Research Center at a recent Hutch Town Hall on health disparities.
And it’s crucial, especially as racial inequality has launched yet another national crisis, to understand them “within the context of the significant economic and social differences that exist in our society,” he said.
Hutch President and Director Dr. Tom Lynch also stressed the importance of recognizing the “ingrained injustice in our culture and our institutions” in a recent email to employees. “For too long, our society and our science has treated human beings with disparate levels of respect. It must be our work to move beyond words to action.”
For Fred Hutch, that action happens through research.
Public health scientists here have been working to disrupt preventable health disparities for decades. Their research informs both health care policy and clinical practice; their programs demonstrate how listening to and working with underserved communities is how you successfully drive change both within and without.
Now they’re using their expertise to protect vulnerable communities dealing with the very disparate spread of COVID-19.
— Fred Hutch President and Director Dr. Tom Lynch
Health inequities happen all along the cancer care continuum, Li said, from who gets prompt cancer screening and follow-ups to who gets a timely diagnosis and high quality cancer treatment. Heap one health inequity upon another, as often happens, and it goes far to “explain the excess mortality rates we see in underserved populations.”
Now think about this in the context of COVID-19, he said.
“Think about who’s getting tested, who has access to supportive care, who has access to drugs in limited supply?” he continued. “We’re using physical distancing to stay safe, but that’s a privilege of someone who has a home where it’s safe to shelter in place. Think about who has a job that lets them work remotely. Who has internet access and who doesn’t?”
Our social conditions exacerbate health inequalities, he said. And the data on COVID-19 backs that up. The infection is already cutting a swath through minorities in the U.S.
“The most striking disparity is with African Americans,” Li said. “They have a mortality rate that’s two and a half times greater than whites. In Chicago, mortality for African Americans is three times higher.”
Latinos and Asian Americans around the U.S. are dying at higher rates compared to whites. And Native peoples’ COVID-19 rates — and suffering — is unparalleled. Infection rates in the Navajo Nation (which spans parts of New Mexico, Utah and Arizona) are the highest in the country, surpassing even that of New York state.
Some of this is due to COVID-19’s deadly effect on those with underlying health conditions like diabetes, obesity and hypertension, which disproportionately affect people of color and others who tend to fall through the health care cracks.
But what people do for a living is also a big part of who’s getting COVID-19. Not all of us have the luxury of working from home.
Blacks and Hispanics are statistically much more likely to do “essential work” than whites. As office workers Zoom through meetings and clack away on keyboards, they’re out there driving buses and sorting mail, working the frontlines in hospitals, and running toward danger as first responders. They’re working shoulder-to-shoulder in meat-packaging and food-processing plants across the country, keeping the country fed.
“Twelve percent of the U.S. workforce is African American,” Li said. “But 30% of our nurses are black. And more than half of our agricultural workers are Hispanic.”
In rural areas like Eastern Washington, home to a large seasonal and permanent farmworker population, those workers are picking and packing fruit in fields and crowded warehouses.
As a result, they’re suffering from a much higher level of COVID-19 infections.
— Fred Hutch biobehavioral scientist Dr. Rachel Ceballos
Two-thirds of the jobs in the Yakima area are considered both essential and hands-on. And as of this writing, Yakima County has over 4,000 cases —
the highest rate in the state. That spike recently led farmworkers to strike, not just for better wages but for safer working and living conditions (seasonal workers often sleep in crowded bunkhouses).
Hutch biobehavioral scientist Dr. Rachel Ceballos, who’s partnered with community health workers in Yakima and elsewhere for years, said COVID-19 has exposed many ugly truths, including how we perceive those who provide essential work.
“The importance of essential and low-income workers and how much they contribute to our society really needs to be highlighted and recognized right now,” she said. “That’s another way to address the institutional racism that perpetuates these inequities.”
Living in larger, multigenerational households may be another reason COVID-19 rates are higher in Hispanics and African Americans. In King County, nearly 40% of Hispanic households and nearly 25% of blacks had four or more people living together. For whites, it’s around 17%.
The area where you live, your “ZNA,” as some researchers call it, matters too. People who live in public housing face a much higher risk of contracting COVID-19. Ditto for those in prisons, jails and nursing homes. Those living in the ‘burbs, not so much.
As program administrator of the Fred Hutch / University of Washington Cancer Consortium’s Office of Community Outreach and Engagement, Kathy Briant has worked with residents of the Yakima Valley for years through the Hutch’s satellite office, the Center for Community Health Promotion in Sunnyside.
Immigration issues and lack of insurance hugely impact the health of those living in the Yakima Valley and many other rural areas, she said. Same for the lack of health care facilities, she said, citing a small hospital in the Yakima area that recently closed.
“Many people here are monolingual Spanish-speaking,” Briant said. “They may go to work even if they have symptoms because they can’t afford to lose money. Or they may not want to get tested because if it comes up positive, they’re afraid of retaliation. There are a number of issues going on.”
One huge issue for both cancer and COVID-19 is the lack of good information and the abundance of misinformation.
“We are hearing a lot of myths about COVID-19,” Briant said. “People think it’s just a cold. Or it’s a political hoax. Or that if you wear a mask, if won’t prevent you from getting it. Families don’t know who they can trust. They also don’t know what they should be doing in terms of personal protection while at home or while in the workplace.”
Unfortunately, some of the misinformation is coming from people who should know better.
“I talked with someone working with the farmworkers and they said even government officials are downplaying COVID-19,” Ceballos said. “They’re telling people ‘Take your Vitamin C.’”
Bad information is usually spread through social connections, Ceballos said, which is a big reason Hutch researchers began using community advisory boards, or CABs, when they first started doing research in the Yakima Valley decades ago. By working with trusted members of the community, reliable, scientifically sound information gets out — and in a way it can be heard and understood.
“It’s a two-way street when we work with these communities,” Briant said. “They listen to us; we listen to them. Once you have trust and an established relationship, it’s much easier to share public health information. They believe you as a credible source.”
— Fred Hutch public health researcher Dr. Linda Ko
Dr. Linda Ko, a behavioral scientist with the Hutch’s Health Communications Research Center, just launched a public health campaign to help people in both Eastern and Western Washington better protect themselves from COVID-19 infection.
"We’re trying to get people to follow the data and the health guidelines and to avoid disinformation, the false information, rumors and conspiracy theories that sometimes spread during uncertain times,” she said. “We’re using lots of images. Text is wonderful, but you need to be able to read it — and there are already lots of text-based messages out there. People need to see what 6 feet of distance looks like.”
She’s also collaborating with a large community-based organization that works with underserved communities in the Seattle area on a COVID-19 survey and is in the midst of retooling a stress-reducing mindfulness intervention — from in-person to smartphone — so families in Yakima Valley can get the help they need now.
“We didn’t think we could do it because of COVID-19, but they said, ‘No, this is the time we need it. Everyone’s at home and everyone is stressed!’” Ko said. “It really makes you think about what you’re doing as a scientist, the importance of making an impact in the lives of people, not just putting out another publication.”
The pandemic has forced drastic changes in programming for the OCOE, which recently added four community health educators and provides patient navigators to help non-English speakers navigate cancer treatment at Seattle Cancer Care Alliance, the Hutch’s clinical-care partner.
In-person events have been cancelled, but OCOE has quickly pivoted. They held a Facebook Live discussion on black women’s maternal health during National Women's Health Week in May; broadcast an abbreviated health equity symposium via Zoom and launched an e-newsletter packed with links to emergency food resources, COVID-19-busting strategies from scientists and mental health tips for weathering the quarantine.
Working hand-in-hand with these communities, approaching them with respect and showing up with resources when they’re needed is how Hutch scientists are building trust in science and public health practices.
It’s not easy work. Centuries of medical experimentation and abuse — what some call “medical Apartheid” — have contributed to a fraught relationship between people of color and the medical and scientific community.
“Part of what we have to do in the process of conveying scientific information is to care about people,” said Paul Buckley, director of Diversity Equity & Inclusion for the Hutch. “It’s incumbent on us to develop a strong, caring relationship with all the communities we work with, especially those experiencing disparities.”
Also key: recognizing a long-broken system.
“It’s important to think about the structure of our society and the inequities that come about from that structure,” Buckley said. “It creates a culture of acceptance even in how we think about who is worthy of a certain quality of life. It’s also important to think about how much we lean on those far less privileged than ourselves to make sure we are good.”
Hutch President Dr. Tom Lynch stressed the importance of recognizing the effects of racial discrimination on public health.
"Racism and the impact of racism is a disease in and of itself," he said. "We've seen how that is impacting our mission in the disparate impact of COVID-19 and cancer, and the diseases we research and treat — and how intimately related they are. The Hutch has to own part of the solution as we move forward."
Ceballos agreed that retooling public health interventions for the coronavirus is really just a fraction of what needs to be done at this time. The entire infrastructure needs to change.
The need for change is so great, even infectious disease experts are stressing the importance of protesting inequality and the “paramount public health problem of pervasive racism” in the midst of a pandemic.
“The institutional racism is coming out into the open and it’s so obvious,” Ceballos said. “Now would be the time for immediate restructuring, in my mind. I don’t have control over that, but I can document it through research and that impacts policy.”
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.
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