Black Women Face Stark Disparity in Breast Cancer Deaths | Healthiest Communities Health News

Advancements in the detection and treatment of breast cancer have led to a 43% overall decline in the disease’s death rate over the past three decades, resulting in 460,000 lives saved.

Yet for Black women, that progress has left too many behind. They have a 40% higher death rate from breast cancer than white women – despite a lower incidence rate – and have the lowest five-year survival rate of any racial or ethnic group for nearly every stage of diagnosis, according to the latest figures from the American Cancer Society. The size of the Black-white mortality gap has remained relatively unchanged since 2011.

“All women of color are experiencing these disparities, but they do happen to be the widest for Black women,” says Rebecca Siegel, senior scientific director of surveillance research for the American Cancer Society and a co-author of the organization’s recently released report containing the data.

Yet as health care seeks to close a cancer screening gap caused by the COVID-19 pandemic, experts also believe the time is now to address inequities in quality and access that are believed to contribute to the disparity in breast cancer outcomes.

“The pandemic unfortunately showed us a lot of cracks in our health care system that some of us kind of already knew … were there, but it really just exacerbated it,” says Jordan Henderson, an oncology nurse and director of program development for the Academy of Oncology Nurse & Patient Navigators.

COVID-19 led to a crisis in disease management that could have an impact for years. A study published in JAMA Oncology last year estimates 3.9 million fewer breast cancer screenings occurred in January through May of 2020 compared with the same period in 2019 – an issue that could lead to cancers being discovered at a later, more dangerous stage.

Early detection has been cited as a major contributor to the steep decline in breast cancer mortality: Patients with stage 1 breast cancer – in which the cancer is relatively small and largely localized – had a recent five-year relative survival rate of more than 99%, according to the American Cancer Society, compared with a 29% rate for those with more advanced stage 4 cancer. Survey data from the Centers for Disease Control and Prevention also indicates the percentage of women 40 and older who had a mammography screening within the previous two years more than doubled in the past three decades, from 29% in 1987 to 66% in 2018.

Yet Black women are the least likely racial and ethnic group to have their breast cancer diagnosed at an early stage: From 2015 to 2019, just 57% were diagnosed when the disease was still localized compared with 68% of white women and 66% of women overall, according to the ACS report.

Meanwhile, 6% of women overall were diagnosed with breast cancer once the disease had reached the “distant” stage, when it can be detected in other parts of the body like the lungs, liver or bones. The ACS report shows that 8% of Black women were diagnosed during the distant stage of the disease, compared with 5% of white women, 6% of Hispanic women, 5% of Asian or Pacific Islander women, and 7% of American Indian or Alaska Native women.

While biological differences may play some role in the disparity in outcomes, the ACS report pins much of the Black-white mortality gap in breast cancer on “historic and continued systematic racism that is reflected in breast cancer care across the continuum, from lower quality screening to substandard treatment.”

Indeed, while Black and white women have similar rates of receiving mammography screenings, the report says, Black women are more likely to get those screenings at a facility with fewer resources and to wait longer for follow-up after a screening showing something may be wrong.

“Very little of this has to do with differences in biology,” says Julie Palmer, the Karin Grunebaum cancer research professor at Boston University’s Chobanian & Avedisian School of Medicine and a scholar with breast cancer organization Susan G. Komen. “We know there have been improvements in making mammography financially more accessible to most women through state and federal laws, but that’s not the same as it necessarily being accessible to all women.”

Experts agree inequities in the health care services Black women often receive play a substantial role in their breast cancer outcomes. “It comes down to not treating Black patients (the same) because of their area code, or because of where they live, or because of their insurance or their incomes,” says Sheila Johnson, a scholar at Susan G. Komen.

Johnson was diagnosed with stage 4 breast cancer in 2009 and serves as a patient advocate, counseling women of color about her experience and encouraging them to engage with clinical resources and to enter into clinical cancer trials where they can get access to potentially lifesaving medications and therapies.

A recent survey of women with metastatic breast cancer found that while 83% of Black respondents reported they were either somewhat or very likely to consider participation in a clinical trial, 40% reported they had not been informed by their care team about the opportunity to enroll in one.

“We talk about Henrietta Lacks and we bring up the Tuskegee syphilis project, but we also have to put our trust somewhere,” Johnson says, referencing past medical efforts that have sown mistrust among African Americans. “I put my trust in research.”

Johnson, who was first diagnosed while serving in the U.S. Air Force, says she has never felt like she experienced any racial disparity in her care, but acknowledges her experience has been different from those of many of the Black women she counsels. She says establishing greater equity in breast cancer care must start with outreach efforts like deploying mobile mammogram screening units and holding health fairs in vulnerable communities.

But Johnson says trust also plays a huge role and must begin with clinicians taking the time to get to know patients so they can develop a better understanding of issues that could hinder their care.

“It only takes a few minutes to ask questions that can make a difference in that person’s care,” she says.

At the same time, Palmer and other experts believe increasing investment in support programs like patient navigation can be vital for reducing nonmedical factors that can hinder regular access to care for vulnerable patients. These factors can include everything from a lack of adequate health care coverage or reliable transportation to an inability to get time off work for an appointment or to pay parking fees at a provider’s facility.

“People who are not health care providers are trained to communicate information about the aspects of breast cancer diagnosis and treatment and accompany patients through those appointments,” Palmer says of patient navigators. “They help them navigate all of the complicated parts of being a patient with cancer and all those factors that can make it more difficult for people who either are lower-income or are from a group who are not often treated well by the medical establishment.”

In recent years, patient navigators have been closely associated with the Affordable Care Act, charged with helping people find health insurance coverage under the landmark law. But the model for patient navigation is rooted in the early 1990s when Dr. Harold Freeman, a surgical oncologist at Harlem Hospital Center – now known as NYC Health + Hospitals/Harlem – launched a program aimed at tackling social and financial barriers that could hinder medically underserved cancer patients from receiving timely care.

Dr. Tracy Battaglia, associate director of Boston Medical Center’s Breast Health Center and director of the Women’s Health Unit at Boston University’s medical school, says Freeman’s delivery model involved women of color from Harlem helping women get mammograms and engage more with the clinical care system.

“That sort of sparked a national investment in this notion of patient navigation, which has continued to demonstrate the benefits in improving all kinds of access to cancer care across the spectrum,” Battaglia says.

At Boston Medical Center, Battaglia says seven full-time navigators work in medical oncology, providing support to a patient population of about 200 newly diagnosed breast cancer cases annually, of which more than half are Black and Latino patients.

“There’s now almost an expectation cancer centers have patient navigation,” Battaglia says.

Battaglia says the goal is to one day create a more sustainable and robust navigator workforce that can follow patients throughout their experience across the entire care continuum. She says currently, there often are navigators working within various clinical units, which can lead to multiple handoffs and potential gaps in coordination when patients go to different departments to receive care.

Yet a major barrier to those efforts has been a lack of funding – Battaglia says the majority of funding for her program comes from grants and philanthropic donations, and that patient navigation services are not widely recognized as reimbursable by commercial health insurers or public payer programs like Medicare or Medicaid.

Battaglia and Henderson – of the Academy of Oncology Nurse & Patient Navigators – say another issue that needs to be addressed is sorting out the wide variation that currently exists in defining what patient navigation is and the scope of the services it entails. A recent study Battaglia co-authored in the journal Supportive Care in Cancer showed that while patient navigation programs were common across six hospitals treating breast cancer patients in Boston, there was variation in the scope of their services, including in how soon navigators engaged with patients, which patients were eligible for navigation and how frequently navigators interacted with patients.

Calls have come from advocates and some lawmakers in recent years to make patient navigation services reimbursable. Legislation introduced in the House of Representatives in 2019 would have required state Medicaid programs to cover the cost of navigation services, but didn’t make it to the floor.

Still, Henderson and others feel the need for more screening may prompt health care providers and eventually policymakers to look to patient navigation as an effective means of furthering those efforts.

“It benefits everybody – it benefits the patient, it benefits the physician, it benefits the hospital and insurance,” Henderson says. “There’s not one area where we don’t touch.”