Black Women & Cancer: The New Thirty Year Study Launched To Change The Game For a Devastating Situation– And How Women Can Help Themselves Now

Addressing Racial Equity In Healthcare & What Patients Can Empower Themselves

• Black and African Americans have the highest mortality rate for cancer compared to other racial groups, and Black women are particularly hard hit.
• A new study – Voices of Black Women – has begun enrolling Black women between 25 and 55 with no history of cancer, with certain skin cancers as the exception. The goal of the 30-year study is to learn why this group is dying more from cancer.
• Recommendations to improve health outcomes for Black women include improved access to cancer screenings sooner, addressing racial bias in medicine, and building trust within Black communities.
• SurvivorNet experts recommend emphasizing earlier, more frequent screenings, increased access to clinical trials, and providing more access to oncologists to help Close the Gap in care.

You may have heard Black Americans have the highest mortality rate for all cancers combined compared to any other racial group. Though this startling statistic has been widely known for years, questions as to why Black Americans – particularly Black women - face higher death rates haven’t been fully answered. We know the biology and genetics of Black women contribute to these disparities because in the case of triple-negative breast cancer - an aggressive form of the disease - a gene that can slow cancer growth isn't as pervasive in Black women compared to white women. Other factors like limited access to care and racial bias in medicine are contributing factors, but is there more to this medical mystery? The American Cancer Society launched a groundbreaking study focused specifically on Black women to delve deeper into why cancer impacts this community so hard. “I’m hopeful that we will generate more granular information on what is really driving these higher mortality rates among Black women,” Dr. Kathie-Ann Joseph , a breast surgeon and vice chair for diversity and health equity in the Department of Surgery at NYU Langone Health Perlmutter Cancer Center tells SurvivorNet. WATCH: Solutions to Racial Disparities in Cancer Care The study, “ Voices of Black Women ,” aims to improve the health of Black women. It’s begun enrolling Black women between 25 and 55 from various U.S. states with sizeable Black or African American populations, including the Southeast, Mid-Atlantic, Midwest, and California. The women wishing to participate in the study cannot have a history of cancer except basal or squamous cell skin cancer. The study will follow the women for 30 years to monitor their health. “This study includes women who are not only African-American but may be of Caribbean or direct African descent who recently immigrated. We may find different patterns in these subgroups, which may be quite interesting. We haven’t had studies large enough to see if this population has distinct differences,” Dr. Joseph said, who also enrolled in the study. While Black men and women experience higher mortality rates from cancer, women are the focus of the study. The CDC says between 2015 and 2019, “Black/African American women were just as likely to have been diagnosed with breast cancer; however, they were almost 40% more likely to die from breast cancer, as compared to non-Hispanic white women.” The agency adds that Black/African American women were “twice as likely to be diagnosed with stomach cancer, and 2.3 times more likely to die” from it compared to white women. Dr. Joseph specializes in Black women’s cancer care, specifically breast and cervical cancer. She says the reason why the mortality rate for Black women diagnosed with these types of cancer is higher is complicated. “Breast cancer tends to present at a younger age in Black women (median age of 58 versus 62), and Black women have a higher incidence of breast cancer in women under 40,” Dr. Joseph explains. Women diagnosed with early onset cancer (50 and younger) are “already an independent risk factor for higher mortality,” Dr. Joseph adds. “Breast cancer-specific survival appears to be modulated by molecular subtype with larger differences in mortality rates observed among young women with hormone receptor-positive tumors,” Dr. Joseph said. Women of African ancestry are more likely to get triple-negative breast cancer - an aggressive form of the disease - than women of other races and ethnicities. RELATED: Clinical Trials for Breast Cancer WATCH: Understanding triple-negative breast cancer. Genes likely factor into who gets triple-negative breast cancer. Researchers at Weill Cornell Medicine found people whose breast tumors have higher levels of an immune-related gene called DARC/ACKR1 live longer after their breast cancer diagnosis. The gene, when present in breast tumors, slows the cancer's growth and spread. However, a gene mutation extremely common in women of sub-Saharan West African ancestry seems to lead to lower levels of DARC/ACKR1 in tumor tissue, which allows the tumors to grow and spread quickly. Women of African ancestry who have this gene mutation are at greater risk for triple-negative breast cancer. One cannot ignore other factors such as access to care, cancer screenings, and healthcare provider bias. “Access to screening as well as provider bias, both explicit and implicit in screening recommendations, and the treatment of Black women when diagnosed with breast cancer” may also contribute to the higher mortality rate for Black women diagnosed with breast and cervical cancer, Dr. Joseph said. SurvivorNet's Close the Gap initiative is committed to drawing added awareness of these disparities and providing solutions to improve the survival rates of all people diagnosed with cancer, regardless of their background. Our partners in this initiative include NYU Langone and The Perlmutter Cancer Center. We are committed to the fight for equality.

Solutions to Closing the Gap

SurvivorNet experts recommend emphasizing earlier, more frequent screenings. Other focus areas to improve access to care for racially diverse groups include:

• Reviewing a patient’s family medical history
• Address income inequality. Lack of access to healthcare due to no or limited health insurance is a barrier for some low-income patients.
• Increased access to clinical trials and oncologists
• Greater overall access to healthcare
• Improve the number of oncologists from diverse backgrounds

Overcoming Cultural Barriers to Improve Healthcare for Black Women

Clinical trials and medical studies are crucial to understanding how medicine works. However, most people participating in these studies and clinical trials are white. The American Society of Clinical Oncology (ASCO) says Black Americans are “under-represented in cancer clinical trials,” which can limit our understanding of therapeutic response to Black populations. The Federal Drug Administration (FDA) said in a 2020 report that studied demographic data on clinical trials for drug participation 75% of participants were white, 8% were Black African Americans, 6% were Asian, and 11% were Hispanic. WATCH: Black Americans and cancer screenings. The federal agency noted that patient recruitment and retention were critical to understanding the effectiveness of clinical trial results. “As it is, patient recruitment in oncology clinical trials is quite low. For Black patients, it is about 4%,” Dr. Joseph said, regarding the need for more diverse participation in this critical area of medicine. Dr. Joseph highlighted some key areas the healthcare community must address to improve Black and other racial groups' participation in medical studies and clinical trials. “Trust has to be built not only between the doctor and the patient but also between the hospital and the community." "Moreover, there should be efforts to recruit minority patients by having diverse staff and ensuring that the language used in the recruitment literature is at the appropriate reading level and translated into the languages common in the community,” Dr. Joseph explained.

Building Trust

“It all comes down to trust and familiarity,” psychologist and founder of InnoPsych Dr. Charmain Jackman tells SurvivorNet. “Our shared heritage engenders trust and serves as a first step to Black people trusting the medical field. However, there is still so much inherent bias in the way we are trained that if the Black professional is not doing the work of decolonizing (i.e., removing bias) their practice, my guess is that trust will be hard to keep, and the Black patient may not return for care,” Dr. Jackman adds. Efforts to get more Black Americans to heed medical information, even from legitimate sources, become easier once past racism in medicine is fully atoned. WATCH: Merck’s Josette Gbemudu explains how to improve outcomes for Black cancer patients. Among the most notable instances of racism in medicine include the 1932 U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee . It involved 600 Black men, 399 with syphilis and 201 without the disease. The men involved were not offered penicillin to treat the disease. An advisory panel sanctioned by the Assistant Secretary for Health and Scientific Affairs found the Syphilis Study was " ethically unjustified ." Other cases that left Black Americans harmed in medical advancements include Henrietta Lacks, who sought medical treatment for what turned out to be a malignant tumor on her cervix. According to Johns Hopkins Medicine, Lacks' cells obtained during a biopsy functioned differently than normal cells. Her cells, also known as "HeLa cells, doubled every 20 to 24 hours," while cells collected from others would die. Her cells have since been used to study the "effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans." Problems arose once word spread. Physicians kept Lacks' family unaware her cells were being used without consent. Medical experiments by the "Father of Gynecology," James Marion Sims, the 19th-century physician who developed techniques still used today in women's reproductive health, add to the distrust. Despite Sims' development of long-lasting techniques, he did so at the expense of enslaved Black women. The prices Black Americans paid because of these historical incidents are wide-ranging and still felt today. The distrust discourages Black Americans from engaging in clinical trials and medical studies in more significant numbers. By not participating in clinical trials that test the effectiveness of new medical treatments, there is a lack of information on whether outcomes will be the same for these patients. The Voices of Black Women study is the largest of its kind. With intentional efforts to target a diverse group of Black women who can connect with them culturally, we may get answers in the coming years about why this resilient group is at higher risk of dying from cancer.