Black and Latino patients are more likely to receive a diagnosis of and die of cancer than White patients. How can we end this disparity?
Here’s the grim truth of the matter: According to the National Cancer Institute, Black people are more likely to die of most cancers than any other racial group.
Despite improvements in cancer outcomes across the population in recent years, racial disparities remain. Dr. Luis Raez, chief scientific officer and medical director of Memorial Healthcare System’s Memorial Cancer Institute in Pembroke Pines, Florida, says the problem persists partly because it’s too complex for a single explanation or solution.
“It’s a social problem, it’s a biological problem, it’s a system problem,” Raez says. “And so we need to tackle the problem from all corners, and hopefully one day we’ll improve the health care of all patients.”
Temi Omaghomi, a Black 23-year-old compliance analyst diagnosed with ductal carcinoma in situ in June 2020, experienced this form of racism when she did not receive the same level of breast cancer care as her White counterparts.
“Diagnosis was a really hard time, and I didn’t feel like I was being treated as I should have been,” Omaghomi says. “But it wasn’t until I found an online support group — and the White women told me what the doctors should have been testing and scanning for — that I realized what I was missing. And nobody even talked to me about fertility. Nobody offered me a therapist or a dietitian. These things were offered to others but not to me.”
So how do we ensure that Omaghomi and people of all races have the same access to high-quality cancer care and the best possible rates of recovery?
Disparities in cancer treatment can be measured in a variety of ways: The number of new cases, existing cases, death rates, survival, stage at diagnosis, etc. Regardless of how you ask the question, the answer is still tragic.
According to a 2020 Cancer Disparities Progress Report by the American Association for Cancer Research (AACR):
• Black men are 111% more likely to die of prostate cancer than White men.
• Black women are 39% more likely to die of breast cancer than White women.
• Asian Pacific Islanders are twice as likely as White Americans to die of stomach cancer.
Darcie Green, executive director of Latinas Contra Cancer, a nonprofit organization in San Jose, California, that provides services to the underserved Latino population around issues of cancer, says there isn’t a single problem but “a fabric of problems that lead to prevent- able, predictable, adverse health outcomes.”
According to the National Cancer Institute, patients who have low incomes, low health literacy or lack health insurance, transportation to a medical facility or paid medical leave are less likely to have cancer screening tests than patients who don’t face these obstacles.
“Nobody needs to die of cervical cancer,” Green
says. “It’s slow growing and can be detected early and prevented. But Latinas are still disproportionately impacted by it, and that’s largely because we face barriers to care in the area of cervical cancer screenings and HPV vaccines for younger Latinas.”
And the challenges continue, even after receiving a diagnosis.
“When you are diagnosed with cancer, it can be disruptive and scary for anyone,” Green says. “But if you’re in a household that is already food or housing insecure, plus now you’ve lost your income and have inadequate health insurance, this will negatively impact your health.”
“Rosemary,”* a 48-year-old Hispanic woman with kidney cancer who is living in the U.S. without legal permission and only had insurance that covered medical emergencies, experienced these hardships last year. In January 2020, she went home from cancer surgery with a new pain in her rib cage that didn’t go away.
“I wasn’t able to go back to work because something felt weird,” she said. “It felt like the doctor had moved my organs and not put them back in the right place.”
Her husband was deported, and her daughter was away at college. Eventually Rosemary moved in with her sister, but was unable to pay rent and did not qualify for many assistance programs because of her documentation status. A year later, she is still struggling to recover her health.
Rick Kittles, founding director of the Division of Health Equities at City of Hope, a cancer research and treatment center near Los Angeles, says about 40% of adult cancers can be prevented by lifestyle changes such as reducing or eliminating tobacco, for example.
“Some people say your ZIP code is a bigger predictor
of disease than your genetic code,” Kittles says. “Some neighborhoods lack access to a gym or YMCA, grocery stores and quality school programs. And because some of these communities have been overrun with drugs or crime, people may not feel safe going out or riding bikes. So these communities look different, and their outcomes are different than those communities that are safer and have better access to things like physical activity and quality foods.”
Green says they encourage their clients at Latina Contra Center to overcome this mistrust and advocate for themselves. She notes that many of them have to push to be heard in a way she doesn’t hear about as often from White patients.
Dr. Miranda Lam, radiation oncologist at Dana-Farber/ Brigham and Women’s Cancer Center and Harvard Medical School in Boston, conducted a study that examined disparities in death rates between Black and White patients after cancer surgery. Lam says there have been policy efforts
to encourage hospitals to focus on quality improvement, which may have led to improved cancer outcomes overall. Unfortunately, higher mortality among Black patients with cancer (compared with White patients) still persists.
“The majority of recent efforts have not directly addressed a component of structural racism that may be underpinning the gap in outcomes,” Lam says. “Critical race scholars have argued that racism produces significantly higher rates of morbidity and mortality and decreased overall well-being.”
Maimah Karmo, founder and CEO of Tigerlily Foundation, an organization that provides education, awareness, advocacy and support for young women with breast cancer, thinks a world without disparity should be the goal. “(COVID-19) touched the entire world,” she says. “And all the world’s focus and energy and money went into finding the vaccine, and look what happened? We found one —
in less than six months, and multiple global organizations are working to create other vaccines. Think of the level of money, corporate commitment, time and diversion of focus to immediately put out the fires of this pandemic. Why not put that kind of focus on ending barriers to care for Black people? ... How many more deaths do we need before Black people get the right care?”
One study of the Department of Veterans Affairs (VA) health care system found that Black men were slightly less likely than non-Hispanic White men to die of prostate cancer in the 10 years following diagnosis. Some say this is because Black men were less likely to experience treatment delays in the VA’s system, but others say that the study did not factor in patients who left the VA system to get care elsewhere. The study was unable to conclusively show that equal access to medical care is the only reason disparities were not seen.
One way to remove the obstacles to medical care is to send cancer screening systems to communities and clinical trials into the home, for example, but these are bandages for the bigger problem.
“We need to move toward a universal system of health care where you can eliminate the stressors of different payors and where all patients get adequate care regardless of income or ZIP code,” Green says.
One way to prevent avoidable cancers is to increase patient education and health literacy in Black and Hispanic populations. A lot of information can be found through nonprofit and advocacy organizations like the Leukemia & Lymphoma Society, Tigerlily Foundation and Latinas Contra Cancer.
“We want patients to ask questions and to be curious because it’s their body and they’re coming to the table with something too,” Green says. “Make sure to bring up any concerns, no matter how small.”
Raez, who says that 35% of Memorial Cancer Institute’s patients is made up of minorities, relies on patient navigators to help make appointments and resolve insurance and financial problems.
Getting to the root of this problem, however, involves ending socioeconomic disparities in the United States.
This would help people in disadvantaged neighborhoods live healthier lives and reduce the incidence of prevent- able cancer. A report on the complexity of this topic by AACR calls for new strategies in education and intervention and a deeper look into how to solve socioeconomic disparities.
At Tigerlily Foundation, Karmo is working to tackle racism in the medical system head-on with a variety of programs designed to educate patients and the medical community.
After Omaghomi discovered the support group and Tigerlily Foundation, she found a new doctor who talked her through everything she needed to know and all her treatment options.
Her advice for other newly diagnosed people of color? “First, it’s hard, but breathe and take it one step at a time,” she says. “There are some things you can control and some that you can’t. So let go of what you can’t control. Surround yourself with support groups, and keep looking until you find a doctor you feel comfortable with and understand.”
Raez believes one way to increase clinical trial enrollment is to have more professionals of color in the research field, which could help patients with trust and language barriers.
But more needs to be done.
“When researchers are competing for grants, they should be required to provide a specialized outreach plan that ensures they have certain demographics in their trial,” Green says. “The grant money should depend on meeting those numbers.”
Kittles believes part of the solution rests in the hands of academic medical centers. “I firmly believe many of these ivory tower academic institutions can increase diversity in clinical trials by offering more charity care to patients who are underinsured or unable to pay,” he says.
Raez has a slightly different take, saying that the drug companies should choose to operate their clinical trial programs in public hospitals, even though some patients who are homeless or underinsured may not return for follow-ups.
“They say the (Food and Drug Administration) cannot mandate that minorities must be enrolled in clinical trials, but why not?” Raez says. “If 30% of the population of this country is minority, then why should the FDA approve the use of a drug that is tested entirely on the non-Hispanic White population? How do you think it’s going to work for the other 30%?”
Latinas Contra Cancer started helping Rosemary with housing after her first surgery in March 2020. Then in December 2020, she underwent another surgery to remove an ovarian cyst, and a day later, she started showing symptoms of COVID-19. She tested negative before the surgery, but then tested positive after the surgery. She believes she contracted it during the operation. Because of this, she was unable to recover at her sister’s place (where she’d been living) and unable to pay for a hotel.
“I felt like I was going crazy,” she says. “I was lonely, I lost my job, I had no place to stay. I tried to get help from other organizations, but they needed paperwork and documentation I didn’t have. I didn’t even want to look for help anymore. But then I called Latinas Contra Cancer, and Darcie (Green) got me money for rent and gave me a number to call to talk to someone and get emotional support.”
Rosemary is still struggling, but organizations like Latinas Contra Cancer and Tigerlily are there to help those failed by the medical system.
“We have to get back to our humanity,” Karmo says. “We forget this is about humans, not subjects, case numbers or statistics, and that by action or inaction, we are impacting people’s lives. Sometimes the weapon people use is silence. How many more people need to die before this changes and we end barriers to care once and for all?
To help reduce the inequities in cancer care, Tigerlily Foundation, an organization that provides education, awareness, advocacy and support for young women with breast cancer, offers the following programs:
• The #InclusionPledge — A transparent and tangible framework across stakeholders, holding organizations accountable to make outcomes that will result in dismantling systemic barriers; co-creating solutions resulting in health equity for Black women; and end disparities in our lifetime.
• Advocate Now to Grow, Empower and Lead (ANGEL) Advocacy Training — Young women are trained to know the facts about breast cancer, clinical trials, genetics, health literacy and racial disparities to work as empowered advocates in their communities and with stakeholders nationally to change outcomes.
• Know More Disparities and Pull Up a Seat Events — A bi-directional initiative with sessions where patients, advocates and doctors of color discuss issues that patients of color face in a safe space, followed by an event where advocates educate White allies on what they’ve shared and learned, and work together to co-create solutions.
*Name changed for anonymity.