In many ways, the U.S. cancer picture is getting better. Cancer is becoming increasingly curable or survivable as a manageable, chronic condition.
However, cancer health disparities persist. Barriers in access to care, noninclusive research, unequal use of preventive measures like cancer screening, and findings of different treatment and worse outcomes even for people with similar disease show there’s much work to be done. A new report details the state of cancer disparities today, and experts discuss what needs to be done to move toward cancer health equity.
Last month, the American Association for Cancer Research released the “AACR Cancer Disparities Progress Report 2020,” which highlights ongoing inequities as well as some improvement including:
— Cancer death rate remains disproportionate. For more than four decades, African Americans have had the highest overall cancer death rate of any racial or ethnic group in the U.S. Currently, when considering all cancers combined, death rates from highest to lowest occur among African Americans, followed by whites, American Indians/Alaska Natives, Hispanics and Asians/Pacific Islanders.
— Cancer mortality gap is narrowing. In 2016, the overall cancer death rate was 14% higher for African Americans compared with whites — still not good. However, that contrasts with a 33% higher rate for African Americans in 1990.
— Cancer death rates are declining overall. Since 2000, cancer death rates have been steadily declining for every racial and ethnic group for whom statistics are collected by the National Cancer Institute. The largest overall decline occurred among African Americans (30%) with the least decline among American Indians/Alaska Natives (11%).
— Sexual orientation disparities. Bisexual women are 70% more likely than heterosexual women to be diagnosed with cancer, according to the AACR report. However, more data is needed on disparities affecting the LGBTQ community. One issue is that patient intake forms used by hospitals and cancer centers don’t always ask how people identify their orientation, making it difficult for researchers to evaluate differences in cancer rates, treatments or outcomes.
— Breast cancer. African American women have a 39% higher risk of dying from breast cancer than their white peers. “African American women are nearly twice as likely as white women to be diagnosed with triple-negative breast cancer, which is one of the more aggressive ones,” points out Monica Baskin, a professor in the department of medicine and the associate director for community outreach and engagement at O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham.
— Leukemia. Hispanic children are 20% more likely to develop leukemia than non-Hispanic white children, with this disparity increasing to 38% in adolescents.
— Cervical cancer. Cervical cancer is more lethal in African American women, with a death rate of 3.1%, compared with 2.2% in white women. For the past two decades, cervical cancer incidence and death rates among Hispanic women have been substantially higher than among white women.
— Prostate cancer. African American men have a higher incidence of prostate cancer and twice as high death rates from prostate cancer than for men of any other race or ethnicity.
— Stomach cancer. Asian/Pacific Islander and African American adults have twice the rate of dying of stomach cancer compared with white adults, and Hispanics have nearly twice that rate.
— Liver cancer. American Indian/Alaska Native adults have twice the risk of developing liver and bile duct cancer as white adults. Overall, patients with the most common type of localized liver cancer who don’t have health insurance have overall survival that’s only half as long as patients with private health insurance.
— Lung cancer. Marked regional differences exist in lung cancer. For instance, men living in Kentucky have about a 3.5 times higher lung cancer incidence and death rates than men living in Utah.
Clinical Trials and Precision Medicine
Clinical studies severely underrepresent racial and ethnic minorities. As a result, the understanding of how cancer develops in those populations is significantly lacking. Making clinical research more inclusive is a must for eliminating disparities and achieving equity in cancer outcomes, says Dr. Carol Brown, chief health equity officer at Memorial Sloan Kettering and a gynecologic oncologist at MSK in New York City.
“Another area where underserved patients — particularly racial and ethnic minorities — have not been historically included is in the realm of precision medicine,” Brown says. Within the last five years or so, she says, “We’ve learned that all cancers, even if they’re the same type and of the same organ, can be very different in their genetic makeup.”
For instance, MSK researchers developed a targeted tumor-sequencing test, which can identify mutations in more than 450 genes related to cancer. That allows researchers to identify possible targets for cancer therapies.
However, with national cancer genome research, “Historically, patients of different races and ethnicities haven’t had an opportunity to participate in these types of studies, so we really haven’t learned about the genetic makeup of these patients’ cancers,” says Brown, who is working to change that dynamic with programs that take steps toward personalized medicine for diverse populations.
Age, Location and More
Being older can make you more vulnerable to unequal cancer rates and outcomes, as can a host of other factors:
— Age. “Age is a definite effector in terms of disparities for cancer outcomes,” Brown says. “The highest rates of cancer are in the older population in the United States. In fact, for most cancers, the risk of getting cancers increases as you age.” The trend toward Medicare privatization, or Medicare managed care, may contribute to disparities as well. “A lot of times, we’re seeing that seniors will sign up for what they see on TV as a great plan,” Brown says. “But when it comes that they find out they have cancer, they find that their coverage doesn’t give them access to the type of multidisciplinary, comprehensive care that really produces the best outcomes.” Older patients also have a higher chance of having other medical conditions that can affect their ability to be treated for cancer with surgery, chemotherapy or radiation, she notes.
— Location. “More health care facilities have closed in rural areas, particularly over the past several years,” Baskin says. “We have seen an increase in terms of cancer burden in those communities.” Environmental precursors to or risk factors for cancer like exposure to chemicals may be more common in rural areas, she adds.
— Multiple factors. Environmental factors like air and water quality, access to healthy food, education, income, employment, health literacy, cultural health beliefs and behavioral factors may also contribute to cancer health disparities.
Baskin lost her father to colorectal cancer while she was a senior in high school. The cancer wasn’t detected until it was too advanced to have a good chance to respond to treatment, and he died at 51.
“It is a large part of what I do and what motivates me,” Baskin says. “Now, it’s knowing what I know — that colorectal cancer is absolutely one that we can prevent. And making sure that everyone understands the progression of the disease, how we can go in to get screened and making sure that people have access to that screening is really critical.”
Unconscious biases that can affect decision-making by health care providers is another important issue for Baskin. “It’s important to educate providers around potential biases that might limit recommendations for certain patients to get certain treatments,” she says. “We also know that there are disparities in what treatments are recommended or suggested.”
Among research on health care bias, a study of non-Black medical oncologists and Black patients evaluated videotaped treatment discussions with the new patients. Previously, the oncologists had completed a survey measuring implicit, or unconscious, racial bias in the study published in the Aug. 20, 2016 , issue of the Journal of Clinical Oncology.
From the videos, researchers rated the oncologist communication and quality of the doctor-patient interaction. Patients also responded to questions about how patient-centered the oncologists were and what they as patients took from the interaction in terms of recalling information, feelings of distress, trust and treatment perceptions.
In addition to shorter, less patient-centered and less-supportive interactions with oncologists higher in implicit racial bias, study findings showed less patient confidence in recommended treatments and greater perceived difficulty in going though those treatments.
When it comes to bias and stereotyping, Baskin says, “I’m motivated in my work just to call that out and help people to understand how important it is for everyone to have access to high-quality care.”
“We all deserve to have equal outcomes regardless of the color of our skin, or where we live or what access we may have to health insurance,” says Kathy Briant, a public health researcher and program administrator for the Office of Community Outreach and Engagement at Fred Hutchinson Cancer Research Center in Seattle . “It’s a human right. That’s why disparities matter and why we do this work.”
True inclusion involves bringing people from the community to the table and letting them have a voice, Briant says. One Fred Hutch field office is located in Sunnyside, in eastern Washington, a primarily agricultural area, she explains. For nearly 20 years, the bilingual, bicultural health education team has been running cancer prevention initiatives. “Because the people that have been hired are from the community, they’re trusted, they’re respected,” she says. “So, it makes it really easy for them to engage different stakeholders.”
Designing studies and deciding what kind of cancer research takes priority is a two-way street. “Though the community action board there, we’ve brought ideas about projects researchers want to work on, but the community members have also brought ideas,” Briant says. “Such as, ‘We believe obesity is important but we’re really worried about pesticides. We want to work at looking at: What does it do to us as farmworkers, being exposed and bringing pesticides home?'”
Programs for Improvement
Programs like these are taking positive steps toward better research inclusion and personalized medicine for a diverse population:
— Cancer Health Equity Research Program. CHERP, led by Brown, brings MSK clinical trials to partner hospitals that serve mostly minority and poor populations. That allows patients to receive cutting-edge cancer clinical trials close to home from a community oncologist.
— Genomics Evidence Neoplasia Information Exchange. GENIE is an AACR project to address gaps in knowledge about cancer biology in diverse populations.
— African American Breast Cancer Epidemiology and Risk Consortium. The AMBER initiative, funded by NCI, launched the largest-ever study of breast cancer genetics in black women in 2016.
— Continuing Umbrella of Research Experiences. The CURE program, from the NCI’s Center to Reduce Cancer Health Disparities, promotes cancer research training for diverse populations by supporting ethnic minority students, trainees and scientists at levels ranging from middle school to early investigator.
What You Can Do
As an individual, you can take steps to make yourself and loved ones less vulnerable to cancer health disparities:
Know your family history. With a father who died of colon cancer at a young age, and who also lost an eye to cancer earlier life, Baskin says, “It’s really critical for me to have that information and share it with my health care provider so that provider and I can make decisions about when it’s appropriate for me to get screened and what risk factors I have. Knowing that family history of cancer and other chronic conditions that run in families is really key.”
Get recommended screenings and vaccinations. Age-appropriate cancer screening and vaccines — such as HPV vaccination against the human papillomavirus — may save your life. “It’s really critical to catch cancer as early as possible to allow for treatment, as well as to maintain efforts to prevent individuals from actually having cancer,” Baskin says.
Improve lifestyle behaviors. “This is a tough one for many of us,” Baskin acknowledges. However, maintaining a healthy diet, getting regular physical activity, managing your weight, quitting smoking, limiting alcohol and protecting yourself from ultraviolet radiation all represent efforts toward cancer prevention.
Ask about clinical trials if you have cancer. “Participating in a clinical trial is one of the most important ways that an individual patient can address these issues of disparities,” Brown says. When you do so, she says, you’re getting premier access — you will be followed extremely closely as a patient and receive the latest available advances in treatment and diagnosis.
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