Investigators have uncovered persistent inequities in breast cancer that may systematically leave many patients behind in spite of recent improvements in research, treatment, and survival, according to a recent report from The Lancet Breast Cancer Commission. These findings were published by Coles et al in The Lancet.
Background
Breast cancer is now considered the most common cancer type in the world. By the end of 2020, 7.8 million women had been diagnosed with the disease in the previous 5 years—representing progress in research and cancer management that has led to a decrease of over 40% in the rate of breast cancer mortality in most high-income countries. However, 685,000 women died from the disease in 2020; and inequities related to the physical symptoms, emotional despair, and financial burden of breast cancer are often hidden and inadequately addressed.
Findings in Breast Cancer Inequities
In the recent Commission report, the investigators sought to identify new strategies to tackle inequities in breast cancer. They estimated that the global breast cancer incidence will rise from 2.3 million new cases in 2020 to over 3 million by 2040 and that breast cancer mortality would increase to 1 million deaths per year by 2040—disproportionately affecting low- and middle-income countries.
Despite its prevalence, the investigators noted that there are significant gaps in breast cancer knowledge that continue to prevent effective action and lead to unequal progress in metastatic breast cancer. For instance, although 20% to 30% of patients with early-stage breast cancer may experience relapse, a majority of national cancer registries do not typically record relapse. Therefore, the number of patients living with metastatic breast cancer is currently unknown, hampering the provision of treatment and care. Further, many patients living with metastatic disease often express feelings of abandonment and isolation.
Over the past decade, outcomes in metastatic breast cancer have improved considerably. The median overall survival for patients with HER2-positive and estrogen receptor–positive/HER2-negative metastatic breast cancer—encompassing approximately 85% of patients with metastatic breast cancer—has reached 5 years where recommended therapies are made available. Some patients may now experience survival of 10 years or longer with metastatic disease. In a recent Commission survey of 382 health-care professionals (70% of whom were oncologists who predominantly had a clinical focus on breast cancer), 55% agreed that specific subtypes of metastatic breast cancer may become curable, and 75% agreed that metastatic breast cancer would become a chronic disease.
“[Metastatic breast cancer] remains poorly understood by the public, policymakers, and even health-care professionals,” explained Lesley Stephen, a collaborator and patient advocate. “Some patients have told me that they feel written off. This sense of being ignored and left behind can mean they are less likely to seek help or engage with research that could help them. A diagnosis of [metastatic breast cancer] should not stop a [patient’s] contribution to society, but patients with metastatic disease need more support and information in order to feel valued,” she continued.
Hidden Costs and Initiatives to Improve Care
The investigators proposed that a minimum of 70% of cancer registries worldwide should record cancer stage and relapse. These data could drive significant improvements in metastatic breast cancer care, outcomes, and emotional well-being among patients. Initiatives that promote societal inclusion of patients living with metastatic breast cancer may also be paramount—for example, changes to labor market laws that empower more flexible working arrangements. With a shift in perceptions away from negative societal attitudes, it may be possible to facilitate optimal support, treat most metastatic disease, and alleviate suffering in this patient population.
Concurrently, the scale of breast cancer–related costs is not adequately measured and remains overlooked by policymakers and society. “[S]ociety and policymakers currently see only the tip of an iceberg,” the Commission authors stated. These underrecognized breast cancer costs may be financial, physical, psychological, emotional, and social—with impacts on patients, their families, and the wider society—and are not fully captured by current global health metrics.
In response, the investigators established the CASCARA UK-based pilot study to provide a snapshot of the economic burden and supportive care needs experienced by those affected by breast cancer. Nearly all of the 606 patients with breast cancer and caregivers surveyed by the Commission stated physical or well-being issues related to breast cancer—including job loss and sexual dysfunction.
Additionally, 20% and 27% of the participants with early-stage breast cancer and 25% and 35% of the participants with metastatic breast cancer reported difficulties covering the costs of travel for treatment and financial problems, respectively. The findings pilot research suggested that, even in countries with a health-care system that was free at the point of care, patients with breast cancer can incur hidden costs.
Building on previous work, the investigators also indicated that patients with breast cancer experienced serious health-related suffering, an indicator of the need for palliative care. Based on the reported 685,000 global breast cancer deaths in 2020, an estimated 120 million days were spent with serious health-related suffering per year among patients who died from breast cancer. A further 520 million days were estimated among patients living with the disease. The data revealed patients experiencing pain, shortness of breath, fatigue, and other often resolvable, distressing symptoms.
“The impact of breast cancer is wide-reaching, and the studies included in our report hint at the enormity of related suffering and negative experiences at all disease stages. Even in countries with well-developed health-care systems, patients with breast cancer experience inadequate support and care. In countries lacking affordable health-care facilities, patients experience these costs more commonly and intensely, too often leading to catastrophic spending and impoverishment. Global data are essential to expose, better understand, and address the multiplicity of needs of all [individuals] affected by breast cancer and significantly reduce the global burden of preventable suffering,” emphasized co–study author Carlos Barrios, MD, of the Oncology Research Center at the Hospital São Lucas in Brazil.
The investigators advocated for the development of novel tools and metrics that identify and capture the many costs associated with breast disease. This measurement should guide policymakers to invest in breast cancer prevention, early detection, cost-effective therapy, optimal management, financial protection, and other interventions designed to relieve suffering.
The investigators also noted that women who are newly diagnosed with breast cancer often report an immediate sense of disempowerment. Therefore, strengthening patient–health professional communication may be critical to improving quality of life, decision-making, body image, and adherence to therapy and could positively impact survival.
“Women’s fundamental human rights have historically been accorded lesser respect than men’s in all settings, with implications for patient agency and autonomy. Every health-care professional should receive some form of communication skills training. Improving the quality of communication between patients and health-[care] professionals, though seemingly simple, could have profound positive impacts that extend far beyond the specific setting of breast cancer management. Patients should be encouraged to exercise their voices, choosing their level of involvement in care decisions,” stressed co–study author Reshma Jagsi, MD, Professor at the Emory University School of Medicine.
The investigators called for 100% of health-care professionals in all countries to receive communication skills training and for patient involvement in all stages of clinical research on breast cancer—from concept to translation into clinical practice. To support these transitions, the investigators outlined a framework based on strategies to build rapport and empathy, share information, check understanding, and jointly agree on next steps with patients.
Conclusions
“Recent improvements in breast cancer survival represent a great success of modern medicine. However, we can’t ignore how many patients are being systematically left behind. Our Commission builds on previous evidence, presents new data, and integrates patient voices to shed light on a large unseen burden. We hope that, by highlighting these inequities and hidden costs and suffering in breast cancer, they can be better recognized and addressed by health-care professionals and policymakers in partnership with patients and the public around the world,” underscored lead study author Charlotte Coles, PhD, Professor in the Department of Oncology at the University of Cambridge, Research Professor at the National Institute for Health and Care Research, and an oncology consultant at Cambridge University Hospitals National Health Service Foundation Trust.
The investigators suggested that up to 25% of breast cancer cases in high-income countries could be prevented by modifying disease risk factors. While education and awareness initiatives may be important in this respect, policy changes that minimize population exposure to modifiable risk factors—including alcohol consumption, overweight, and physical inactivity—could be vital to reduce breast cancer incidence.
In addition, systematic approaches to identifying patients at increased risk of breast disease may enable equitable access to personalized prevention strategies such as cheap and effective treatments. The investigators argued for improved early detection programs, beginning with efforts to promote stage shifting in diagnosis so that at least 60% of confirmed invasive cancers are early-stage disease.
“In all countries, women with low incomes from minoritized backgrounds often have breast cancer diagnosed at a late stage, with a higher risk of dying. Our research lays out numerous other inequities in breast cancer that are at risk of widening further, and that can be addressed through global collaboration. Access to evidence-based prevention and care that isn’t dependent on where an individual lives or their ability to pay would reap wide-ranging benefits for patients, families, and health-care systems striving to achieve universal health coverage. We urge decision-makers to implement our recommendations and accelerate progress on closing the breast cancer equity gap,” concluded Benjamin Anderson, MD, Professor in the Department of Surgery and Global Health at the University of Washington.
Disclosure: Support for this Commission was provided by the National Institute for Health and Care Research, Breast Cancer Now, ABC Global Alliance, and the University of Cambridge. For full disclosures of the Commission authors, visit thelancet.com.
