How to achieve equity in cancer care, research and beyond

New national reports outline our progress on cancer and issue a call to action to eliminate structural racism that drives health disparities
Photograph of two African American women wearing COVID-19 masks, sitting in a doctor's office
Cierra Sisters founder Bridgette Hempstead, left, and Katrina Freeman have both dealt with cancer — and structural racism in cancer care. The AACR report highlighted the use of patient navigators and patient advocates like Hempstead to improve access for underserved people.. Photo by Robert Hood / Fred Hutch News Service

Read longtime Hutch public health researcher Kathy Briant's response to the AACR's report in this commentary.

 

The U.S. may be making progress in our nearly 50-year-old war with cancer thanks to genomic research and the development of molecularly targeted treatments, but not everyone is benefitting.

A pair of hefty national reports released over the past week by the American Association for Cancer Research illustrate both the progress — and the lack thereof — in easing the burden of cancer on the American population. In addition to the 10th annual Cancer Progress Report touting new drug approvals, genomic advances and liquid biopsies, the AACR published its inaugural Cancer Disparities Progress Report, a baseline document on the inequities in cancer in the U.S.

With it, came a strong call to action to fix the baked-in structural racism that's been a driving force behind the “decades of significant social and health inequities” experienced by communities of color.

African Americans, for instance, have had the highest overall cancer death rate of any racial or ethnic group in the U.S. for 40 years. Black women have an almost 40% higher risk of dying from breast cancer than white women. The mortality rate for Hispanics with stomach cancer is twice that of non-Hispanics. And American Indians and Alaska Natives have strikingly higher liver cancer rates.

The lopsided list goes on, as health disparities scientists at Fred Hutchinson Cancer Research Center can well attest.

“Higher rates of new cancers and higher rates of cancer deaths are experienced by a number of populations, particularly the medically underserved,” said Hutch epidemiologist and AACR Cancer Progress Report co-author Dr. Christopher Li in a virtual AACR briefing to Congress. “These disparities date to the very founding of our nation and persist to this day, and they are present along the full cancer continuum,” including in education about cancer prevention, access to screening tests and delivery of lifesaving treatments, he said.

That’s unacceptable, said AACR president Dr. Antoni Ribas.

“Race, ethnicity, geographical location and income should not dictate cancer outcomes but unfortunately, that’s what happens,” he said. “Progress has been too slow for people of color. It’s time for the scientific community to step up.”

With that, Ribas and the AACR threw out their gauntlet. The result of two years’ work, the Cancer Disparities Report lays out where our nation currently stands and offers a roadmap to get us where we want to be: a country that provides equitable care for all.

Who is underserved?

Underserved populations aren’t necessarily synonymous with racial and ethnic minorities. People living in rural areas, the elderly, the LGBTQ community, refugees and other groups struggle to access or receive care. But racial minorities — particularly Black, Hispanic, and Indigenous people — shoulder the brunt of health disparities, the AACR reported, in cancer, and now, in COVID-19.

What contributes to these inequities? According to the AACR, it’s complicated. And interrelated.

Environmental factors like having clean air and water; access to healthy food and outdoor spaces to be active are part of it. Ditto for behavioral factors like tobacco use, diet; physical activity and getting screened for cancer (or not). There are social factors — think education, income, employment and health literacy — and clinical factors like access to and quality of health care. Cultural health beliefs, biological, psychological and genetic factors play a part as well.

Lack of insurance is a huge deterrent to care. The report found those without insurance were 45% more likely to die from cancer than those with insurance. (Uninsured people are often diagnosed later when the cancer is more aggressive and harder to treat.) People without insurance are also less likely to receive standard treatments. In 2018, 10% of African Americans, 18% of Hispanics and 5% of whites were uninsured.

“Providing equal insurance coverage has the potential to substantially reduce the burden of cancer for racial and ethnic minorities,” the AACR wrote.

Some, if not all of these factors are directly influenced by structural and systemic racism, the AACR wrote.

“Structural and institutional racism are a primary overarching driver of cancer disparities,” Li said. Read about the Hutch's Office of Community Outreach and Engagement and their work to eliminate disparities.

Dr. Christopher Li, a Fred Hutch cancer prevention researcher and co-author of AACR's Cancer Progress Report 2020, briefed Congress, virtually, as part of the release of AACR's research.

Cancer prevention and policy action

Dr. Veena Shankaran, co-director of the Hutchinson Institute for Cancer Outcomes Research, which works to lessen disparities in cancer outcomes, called the report impressive and comprehensive.

“I’m impressed by the diversity and representativeness of the steering committee,” she said. “And I loved the focus on action at the institutional and policy levels.”

Shankaran also praised AACR’s recommendations to diversify the oncology work force, decrease barriers to clinical trials and improve education efforts regarding diet — and obesity, which remains a huge public health crisis in the U.S., especially among people of color.

A cancer prevention researcher, Li said around 40% of all cancers are caused by what he terms “The Big 5” — smoking, excess weight, unhealthy diet, sun exposure and infections with pathogens like viruses or bacteria.

“The more we can do to avoid or reduce these exposures, the greater effect we can have in reducing the burden of cancer,” he said.

Public education and policy changes like raising the legal age of smoking from 18 to 21 have made a huge impact, he said, causing smoking rates to drop to their lowest point in decades. Vaping, however, remains a major concern.

But it’s not just about modifying the public's behaviors. It’s also about improving access, opportunities and resources for everyone. Currently, people of color are less likely to receive preventive cancer screenings and standard of care treatment for their type or stage of cancer. Those who survive their cancer have a heavier burden of adverse effects

Racial and ethnic minorities have also been largely overlooked in both clinical trials and genomic studies. Precision medicine is “imprecise” when it comes to people of color, the scientists said. Read how Hutch scientists are trying to correct for this “Eurocentric bias” in their cancer prevention work.

Dr. Robert Winn, a physician-scientist, director of the Virginia Commonwealth University Massey Cancer Center and AACR Steering Committee member put it this way in the briefing:

“One size doesn’t fit all. [Patients] respond differently to the same treatment not just because of their genetic profile, but the epigenetic changes — the stuff on top of your genes. That has an effect.”

Epigenetic changes, which are influenced by environmental factors such as stress and nutrition and passed down from parent to child, change how genes are turned on and off.

A person’s ZIP code and neighborhood “probably determines your life expectancy and outcomes more than other factors,” he said. 

The AACR report also pointed to lack of diversity in researchers, physicians and healthcare workers as a big factor contributing to cancer health disparities, as stereotyping and systemic racism continues unchallenged or becomes more ingrained in the absence of diversity.

‘If you never acknowledge it, you’ll never address it’

AACR’s disparities report rang true to two Pacific Northwest cancer patients who've experienced these inequities first-hand.

 “I’ve dealt with disparities all my life,” said Bridgette Hempstead, a metastatic breast cancer patient and founder of the Seattle-area African American cancer support group, Cierra Sisters.

She characterized the AACR report as a good first step.

“The only way you can have health equity is if you truly address and acknowledge there’s a problem,” she said, “If you never acknowledge it, you’ll never address it.”

Hempstead, who regularly partners with Hutch health disparities researchers to better serve Black cancer patients, said she has seen structural racism manifest itself in cancer care many ways.

People of color may be treated with disrespect the moment they walk in a clinic, she said. They may have to wait longer to be acknowledged by the people at the front desk, wait longer to see a health care provider. Once seen, they may not be given the same options in treatment or be offered the chance to participate in a clinical trial.

“The doctor may see them, but they don’t have to give them everything to save their life,” she said. “They can do a minimum and say they’re doing the best they can. But if you have a white woman come in with the exact same issue, she’s going to get everything thrown at her.”

Katrina Freeman, a 60-year-old retired journeyman electrician from Tacoma, was diagnosed with stage 4 colorectal cancer last year. Her first oncologist, she said, seemed reluctant to touch her during exams, did not even mention clinical trials and continually reminded her that her cancer was terminal. After connecting with Hempstead (they’ve known each other since childhood), she went to another oncologist at another clinic.

“Everything has been different ever since,” she said. “The doctor talked about his team and how I was a part of that team. I felt like somebody cared about me. I didn’t feel that before at all. If I’d have believed the first doctor, I would already be dead. She didn’t give me any kind of hope.”

Freeman said she also feels more welcome coming to a cancer treatment center where “people looked like me.”

Making sure doctors, health care providers and scientists reflect the diverse mix of people they serve is another crucial way to disappear bias and structural racism.

“Achieving a truly diverse and inclusive cancer research and care workforce is not only motivated by ethics and social justice, but also is essential to ensure top quality scientific performance and cancer care,” the AACR wrote. Read about Fred Hutch’s commitment to diversity, equity and inclusion.

Are we making progress in our fight against cancer? Yes, absolutely.  

“We’re seeing advancement in treatments and reductions in mortality rates,” said Li. “Immunotherapies have been important. There are a number of positives that we can point to, including innovations in prevention and screening efforts.”

We’re just not there yet for everyone.

diane-mapes

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 dmapes@fredhutch.org. Just diagnosed and need information and resources? Visit our Patient Care page.

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Are you interested in reprinting or republishing this story? Be our guest! We want to help connect people with the information they need. We just ask that you link back to the original article, preserve the author’s byline and refrain from making edits that alter the original context. Questions? Email us at communications@fredhutch.org

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