19 Feb To Your Health: Black Americans and Cancer

Changing the Prognosis

As cancer rates and fatalities dip for most Americans, Black people suffer disproportionately. Understanding the reasons is key to reversing this troubling trend.

By Bev Lucas

If you’re a baby boomer or gen X, there’s a good chance you remember when a diagnosis of cancer was a sign that death was probably just around the corner. That pessimism began to wane when President Nixon declared war on cancer in 1971, signing the National Cancer Act. This landmark law helped transform cancer research, resulting in tremendous progress in the prevention, diagnosis, and treatment of many types of cancer. Today, 68 percent of people with cancer will survive five years, compared with 49 percent in the mid-1970s, according to a 2023 report from the American Cancer Society (ACS). In addition, cancer death rates have dropped for all racial and ethnic groups, with the greatest decline among Black people.

Nevertheless, a closer examination of the data shows that the outlook in the United States is not nearly as bright for Black people as it is for their white counterparts. According to the ACS, Black people are more likely to develop more different types of cancer than whites, and they face greater obstacles to prevention, detection, and treatment. In addition, Black people are more likely to die from most cancers, and to die sooner, than individuals of any other race. A few more eye-opening findings:

• Black women are less likely than white women to be diagnosed with breast cancer, but are 41 percent more likely to die from it.
• Prostate cancer death rates for Black men are more than double those of every other racial/ethnic group.
• Living in segregated communities with high concentrations of Black people is linked to an increased likelihood of being diagnosed with cancer after it has spread—making it more difficult to treat—and to lower rates of survival from breast and lung cancers.
• Black people have the highest rates of colorectal cancer when compared with any racial/ethnic group in the United States, and are about 40 percent more likely to die from it.

The effect of structural racism’s deep roots

The reasons for these disparities are complex and intertwined. But more than a century of systemic or structural racism—defined by the Centers for Disease Control’s (CDC) Office of Minority Health as structures, policies, practices, and norms that assign value and determine opportunity based on the way people look or the color of their skin—is seen as the root cause. Structural racism results in unfair advantages for some and disadvantages for others. For many Black people, the disadvantages start early and last throughout life, as evidenced by higher rates of infant and maternal mortality and chronic disease, greater food insecurity, a greater likelihood of being uninsured—even after the Affordable Care Act—lower median net worth and rates of home ownership, and shorter lifespan.

Fortunately, efforts to eliminate these inequities and close health disparity gaps are gaining momentum. “In the last several years, there has been an increased reckoning around racial and social injustice broadly,” says Pierre Theodore, MD, executive director of Patient Inclusion and Inequity at Genentech. This includes increased attention to health disparities, which he says “are very high on the list of things that negatively impact Black and Brown populations in the US.” A case in point are the disparities in cancer survival rates.

How disparities in cancer screening and treatment impact survival

Medical experts recommend women get screened regularly for breast and cervical cancers, and men for prostate cancer. Experts also recommend colorectal cancer screening for both women and men, and periodic lung cancer screenings for current and former smokers. The goal of cancer screening is to find precancer or cancer at the earliest possible stage, when it’s easier to successfully treat.

Researchers say that not following these recommendations contributes to differences in survival rates but acknowledge that it’s not the only factor. For example, according to a report from the American Association for Cancer Research, the rate that Black women receive regular breast cancer screening is very similar to that for white women. Yet Black women are nearly twice as likely as white women to be diagnosed with breast cancer at an advanced stage, when the disease is less treatable.

Not surprisingly, limited access to high-quality care is another factor. Research shows that Black women are less likely to be screened at facilities with newer screening equipment that offers higher breast cancer detection rates. While routine mammography is recommended, other, more sensitive screening technologies—such as 3D mammography, ultrasound, and breast MRI—may be appropriate as well. “Also underused,” Dr. Theodore points out, “is genetic screening to determine susceptibility to common breast cancer mutations associated with a high risk of breast cancer, such as BRCA1 and BRCA2.” Knowing whether you have a family history of certain cancers, such as breast, prostate, or colorectal, can clarify your degree of risk for those cancers and trigger genetic screening, he says.

Similarly, according to a 2022 study from the ACS, the finding that Black men have the highest prostate cancer death rate of any racial or ethnic group in the US may be due, in part, to less access to high-quality treatment. Notably, when treatment is similar, Black men’s 10-year prostate cancer survival is comparable to or even higher than that of other groups.

The need to diversify clinical trials

Doctors use clinical trials to decide whether new treatments are safe and effective. Results from clinical trials are also used to make recommendations for screening guidelines. But researchers point out that too few Black people take part in such research studies. In fact, from 2014 to 2018, Black people made up 13.4 percent of the US population but only 7.3 percent of participants in biopharmaceutical clinical trials used by the Food and Drug Administration to approve cancer drugs. Also noteworthy: Latino and Hispanic people made up 18.3 percent of the population but 2.8 percent of clinical trial participants.

That means decisions about cancer screening guidelines and the effectiveness of recommended treatments are based on information from studies primarily involving white people, and the findings may or may not be relevant for Black or Latino/Hispanic patients. Thus, even when “appropriate” treatment is offered, less is known about its effectiveness in Black and Brown women and men.

Underrepresentation of people of color in these studies also limits doctors’ understanding of genetic predispositions that lead to higher cancer and mortality rates and why some types of cancer are more aggressive in these populations. Such information could shed light on why Black women and men are more likely than others to be diagnosed with certain aggressive types of breast or prostate cancer.

Nobody asked me

Part of the reluctance by some Black people to join a clinical trial stems from the historical atrocities in clinical research that have come to light, such as experimental gynecological surgeries performed on enslaved Black women or the failure to treat Black men with syphilis in the notorious Tuskegee Study. Dr. Theodore adds that “for many, many generations, Black people have had a significant degree of appropriate mistrust and distrust of health-care systems in the US that have not shown a duty of care for marginalized and underserved populations, and in particular Black and Hispanic populations. Therefore, when a patient is asked, ‘Would you like to be a subject in a clinical trial?’ it doesn’t resonate particularly well.

“That said,” he adds, “an important factor in the low rate of participation is that very often and for many reasons, Black patients are simply not asked to engage in clinical trials.” Data from the BECOME (Black Experience of Clinical trials and Opportunities for Meaningful Engagement) project drive that point home. BECOME is a patient-driven project whose goals are to increase understanding of barriers to clinical trial participation for Black patients with metastatic breast cancer (MBC), and to identify ways to boost involvement. The group recently surveyed 424 MBC patients, including 102 who were Black. The respondents tended to have a high level of resources, including access to care at academic medical institutions, education, and insurance. Yet the survey found that 40 percent of the Black respondents reported that no one on their care team had discussed clinical trials for MBC.

“The question is whether that is due to explicit or implicit institutional biases,” says BECOME project lead Stephanie Walker, a retired nurse who is working to bring her RN license out of retirement. She was diagnosed with MBC in 2015. Dr. Theodore says, “Sometimes the doctor may not ask because they wrongly assume that Black patients don’t want to participate.” That perception is firmly contradicted by findings from the BECOME survey, which found that 80 percent of the Black respondents would be willing to consider participating in a clinical trial. (See “What to Do if Your Doctor Doesn’t Discuss Clinical Trials,” above.)

Know the benefits—and the risks

“Participating in a clinical trial gives researchers a look at how a diverse population reacts to the trial medication,” says Walker. Dr. Theodore explains that “populations differ in terms of how they metabolize and respond to a given drug, so it’s important to know how it performs in a certain population versus a general population or a different population.”

Another significant reason to participate is the potential to gain access to cutting-edge therapies. “Clinical trials should be viewed as an extension of the best care available for patients,” says Dr. Theodore. “Through clinical trials, patients might have access to new therapeutic modalities, other than those currently available outside a research setting, that doctors have reason to believe will benefit the patients.” Walker agrees, saying, “Clinical trials shouldn’t be a last option but should be part of the initial plan of care for all cancer patients.”

Lastly, clinical trial participation benefits society at large. “Participating in clinical trials not only gives the patient the opportunity to help advance research, it helps us help others who look like us,” says Walker.

Keep in mind that all clinical trials—just like any medical treatment or procedure—have risks. It’s possible that the new treatment will have unknown side effects or may not be effective or that your insurance provider will not cover all the costs. That’s why it’s important to ask questions.

Organizations such as the ACS provide useful information to consider and questions to ask when deciding whether to be a part of a clinical trial. You can also reach out to organizations focused on a particular type of cancer. For example, Touch, The Black Breast Cancer Alliance connects patients to breast cancer clinical trial centers; go to touchbbca.org for information and resources regarding fears or concerns. DW

Bev Lucas is a freelance writer in New Jersey. She frequently covers health-care issues affecting communities of color.

“Medical experts recommend women get screened regularly for breast and cervical cancers, and men for prostate cancer.”

EXTRA!

Closing the Gap

An abundance of data exists showing the disparities in cancer care and outcomes. Here’s a look at some efforts to address them.

BECOME

In conjunction with the Metastatic Breast Cancer Alliance, BECOME recently participated in a symposium to educate health-care professionals about having clinical-trial conversations with Black men and women with metastatic breast cancer, says project lead Stephanie Walker. She adds that BECOME’s plans for the future include conducting mini-webinars, aimed at health-care providers, about patients and clinical trials.

Genentech

“We believe that our mission is to address the major health challenges broadly—not just health challenges that derive from the disease itself but the larger social issues related to health care and health inequities as well,” says Dr. Pierre Theodore at Genentech. To that end, Genentech has instituted a multipronged approach to attack those inequities. Such efforts include the Advancing Inclusive Research program, the aim of which is to reduce barriers to clinical trial participation and improve the representation of traditionally underserved populations. “We’ll do this by teaming up with clinical trial sites that have a history of successfully enrolling diverse patient populations, so that we can learn about the strategies they use to recruit and retain clinical trial participants. We’ll use what we learn to help establish a set of best practices that can be shared across the industry.”

Another Genentech effort is the Love Letters campaign, which combines real stories with inspiring art to encourage women to get screened. “The goal is to get people to tell the stories of their family and, in many cases, the interactions they’ve had that have led to positive experiences in managing breast cancer and the strength that it requires.”

The National Black Family Center

This project from the FDA Oncology Center of Excellence aims to increase awareness of the importance of cancer clinical trials and minority population specimen donations to national genomic databases for cancer research.

Stand for H.E.R., a Health Equity Revolution

This initiative of the Susan G. Komen organization, intended to decrease breast cancer disparities for the Black community, launched in the 10 US metropolitan areas where inequities are greatest. The program offers 10 weeks of free online training for Black individuals in those areas who are interested in becoming a patient navigator.

Black Men’s Prostate Cancer Initiative

This initiative provides prostate cancer education resources, support groups for Black men, and a podcast series.

EXTRA!

What to Do if Your Doctor Doesn’t Discuss Clinical Trials

If your doctor hasn’t talked to you about clinical trial options, you should ask, says nurse Stephanie Walker. Another option is to “try to find a second opinion,” advises Dr. Pierre Theodore at Genentech. “A good place to look is a cancer center that is recognized by the National Cancer Institute.” Do your own research on vetted websites, such as clinicaltrials.gov. Also, don’t hesitate