Every American is entitled to equitable access to life, liberty, and the pursuit of happiness. Health care is an essential component of these aims. Cancer care, like other areas of medicine, thwarts a large proportion of Americans from achieving them.
Civil unrest following the death of George Floyd — and too many others — by a police officer arises from the myriad of challenges people of color face in the struggle for equitable treatment, including interpersonal and institutional racism in our society, justice system, economic systems, and health systems.
The racial disparities in COVID-19 infection, testing, and outcomes of care are a painful example of these inequities, which also extend to cancer care. More than 73,000 Black Americans died of cancer in the United States last year; they have the highest death rate and shortest survival of any racial and ethnic group in the U.S. for most cancers. The current cancer care system is failing Black people.
The oncology community must take time to reflect and begin the hard work of advancing a more equitable and just system of cancer care. It’s imperative that we all do more to achieve full equity in cancer prevention, screening, diagnosis, treatment, survivorship, palliative care, and research.
A dismaying study on cancer care was recently published by the University of California, Irvine, that has relevance to these issues. The study confirmed what many previous independent studies have shown: that treating people with cancer using clinical practice guidelines from the National Comprehensive Cancer Network (NCCN), a nonprofit alliance of 30 leading cancer centers I work with, improves their likelihood of successful treatment and improved survival. However, the researchers found that fewer than 50% of patients were treated according to those guidelines, and Black individuals received guideline-concordant care at a much lower rate than non-Hispanic white Americans.
Previous studies have also spotlighted how race, alongside insurance status, play key roles in determining whether patients receive optimal care, appropriate pain management, and experience good treatment outcomes. We must condemn and seek to eliminate racial inequality everywhere we find it, especially in hospitals, doctors’ offices, insurance coverage, and access to care.
The NCCN guidelines are a tool for protecting equity of cancer care for all patients. These guidelines are based on the latest evidence and consensus from top multidisciplinary experts on almost every type of cancer and are free for physicians and patients to use. They offer the most up-to-date and evidence-based options from specialists at the best cancer centers in the U.S. My colleagues and I at NCCN urge health care providers and insurers to make use of these resources and treat all patients accordingly. Health educators, patients, and caregivers can also use the free NCCN Guidelines for Patients to learn more about treatment options and advocate for the best care possible.
We must also recognize, wrestle with, and eliminate barriers that prevent optimal care.
The oncology community has acknowledged and is pursuing solutions for barriers like costs of cancer treatment and medication, transportation, and child care costs, missed paychecks, lack of insurance, and under-insurance, to name a few. Only 12 states allow Medicaid to cover the routine costs of clinical trial participation, systematically excluding individuals who are socioeconomically disadvantaged from access to cutting-edge research therapies.
Recent research highlights the need to dramatically improve minority representation in clinical trials. In fact, an article published Monday in Annals of Internal Medicine illustrates just how shamefully underrepresented Black people are in oncology trials. Not only does this affect the care individuals receive, but raises questions about the universal applicability of trial results. We need more targeted education on clinical trial recruitment for both patients and providers.
Barriers such as conscious or unconscious medical provider bias and deep-seated distrust of medical providers stemming from horrific events such as the Tuskegee study of untreated syphilis are still in need of comprehensive solutions. The medical community must build back trust. Health-care-wide bias training, internal reflection, and careful listening are good places to start.
Patients want their health care providers to have the same backgrounds they do. Only 8.8% of students who began medical school in the U.S. in 2019 self-identified as Black, although Black people make up 13.4% of the U.S. population. The medical community and medical schools must work harder to ensure that Black individuals have a stronger representative presence in the health care workforce by strengthening the pipeline of Black doctors, nurses, and researchers; increasing mentorships at earlier ages; and accelerating recruitment of people of color into the medical field. Black subject matter experts must be recognized as key opinion leaders and included in leadership positions.
Black people aren’t the only Americans who suffer from barriers to optimal cancer care. Disparities must be addressed everywhere they exist, whether they emerge from ethnicity, socioeconomic status, geographic location, sexual orientation or identity, education, language, mental health status, disability status, marital status, and more. Yet it is time to put our strongest efforts to a large group with the highest need.
The U.S. has a long history of oppressing its Black citizens. It also has a rich history of efforts, only partially successful, to move towards true equality. Now is the time to accelerate these efforts — including those around cancer care. It is simply the right and just thing to do.
Robert W. Carlson is a physician, chief executive officer of the National Comprehensive Cancer Network, and professor of medicine (emeritus) Stanford University Medical Center.