Jan 12, 2021
By Aaron Tallent
No person alive today has ever lived through a year like 2020. A global pandemic has killed more than 1.5 million people and disrupted nearly every aspect of daily life, while protests over police brutality and systemic racism toward Black Americans continue to take place in the United States and internationally. This upheaval has laid bare longstanding socioeconomic and health disparities in the United States, prompting individuals and organizations, including ASCO, to reexamine equality and their efforts to achieve it. While cancer care equity has been a high priority for the Society since its founding in 1964, the events of the past year have put a sharp focus on ASCO’s efforts to address health inequities in cancer care.
“ASCO’s focus on equity has been since day one,” said 2020-2021 ASCO president Lori J. Pierce, MD, FASTRO, FASCO. “There's so much that ASCO has done and is doing and we're adding to our efforts even more this year.”
An ASCO Presidential Theme for an Unprecedented Time
The cancer care community has made tremendous progress in cancer prevention, early detection, and treatment, which has reduced overall cancer mortality in the United States.1 Unfortunately, this success remains inequitably distributed, as Black individuals,2patients living in rural areas,3 and populations with lower income and education levels4 continue to experience worse survival rates for many cancers. When COVID-19 cases began to rapidly increase in the first half of 2020, the disparities in treatment and outcomes for the novel coronavirus in some ways mirrored the inequities in cancer care. For example, a July 2020 Health Affairs article on COVID-19 hospitalizations in California reported, “Compared with non-Hispanic white patients, African Americans had 2.7 times the odds of hospitalization, after adjusting for age, sex, comorbidities, and income.”5
This was all taking place as Dr. Pierce, at that time ASCO’s incoming president, was preparing to begin her term with a vision of the oncology community confronting and addressing the complex forces and systems that have created disparities in cancer care, treatment, and research. Dr. Pierce is the first Black woman to serve as ASCO president. Growing up in Washington, DC, and later Philadelphia, she would visit her father’s relatives in segregated Ahoskie, North Carolina, during the summer in the 1960s, where she saw blatant inequality in health care.
“There was a clear difference in terms of access to quality care,” said Dr. Pierce. “White people had access to high-quality care while Black people were largely treated by a single Black doctor who was superb—don't get me wrong—but one person treating a community has limitations.”
While segregation ended, the disparities persisted. As she went into radiation oncology and specialized in breast cancer, Dr. Pierce remained acutely aware of the lack of equity in care through treating patients and analyzing the available data.
“Black women now have a breast cancer incidence that's very similar to that of white women. That was previously not the case; the incidence was lower among African American women,” said Dr. Pierce. “Now, the incidence is close to that of white women, but death rates are markedly different. There is a 40% higher death rate for Black women.”
There are many factors that contribute to this large disparity, including ethnic/racial differences in tumor characteristics, availability of mammographic screenings, and access to oncology care. For her presidential term, Dr. Pierce wanted to increase awareness of disparities and address the inequities in outcomes with a charge to ensure that all patients benefit from advances in cancer and that all oncologists are working to level the playing field for all patients. As June approached, she was set to step into the role of ASCO president with an eagle-eyed focus on the theme she had selected: “Equity: Every Patient. Every Day. Everywhere.”
Then, on May 25, 2020, George Floyd Jr., an African American man, was killed when, while being arrested, Minneapolis police officer Derek Chauvin kneeled on Mr. Floyd’s neck for nearly 9 minutes. Mr. Floyd’s death was captured on camera and led to protests across the world. Many organizations also publicly addressed the issue of racism for the first time. On June 3, ASCO issued a statement from Dr. Pierce, declaring, “We cannot tolerate these inequities any longer. We must commit the same energy and focus we pour into conquering cancer to addressing systemic issues that affect the health of people of color in our country.”
In the months that followed, a majority of Americans stated that they believe race can also affect health care. ASCO’s 2020 National Cancer Opinion Survey found that nearly three in five (59%) Americans agree racism can impact the care a person receives within the U.S. health care system. That recognition is higher among people of color, as 76% of Black, 70% of Hispanic, and 66% of Asian respondents share this view, compared with 53% of white adults.
Through 2020, ASCO began to determine how it could allocate the same level of energy and resources towards equity in cancer care as it did towards research, education, and promotion of high-quality care. This involved examining its efforts to date in achieving health equity and assessing where improvements could be made for all underserved populations.
“These issues are not just issues for Black Americans. These are not just issues for minorities. These are issues for our society at large,” said Dr. Pierce.
A Broadened Mission
A first step for ASCO was to put its commitment in writing. In August, the Society’s Board of Directors added equity to ASCO’s mission statement, which now reads: “Conquering cancer through research, education, and promotion of the highest quality and equitable patient care.”
The next step was to develop a 3-year strategic plan which aligns with the remaining time of the Society’s 5-year plan to move ASCO’s current and future efforts forward with the goal of significantly improving equity in cancer care. This work is being conducted through the ASCO Health Equity Committee. Originally the Health Disparities Committee, ASCO changed the group’s name in 2018 to reflect a transition from reporting disparities in cancer incidence and outcomes to increasing health care equity.
“I really see this point in time for the Health Equity Committee, and also for ASCO as a larger organization, as one in which discussions about health equity and formal planning about how to achieve greater equity in cancer care are disseminating from pockets of the organization out into the whole organization. I could not be more pleased about that,” said Katherine Reeder-Hayes, MD, MBA, MS, chair of the ASCO Health Equity Committee.
A Strategy for Leveling the Playing Field for All Patients
There is no single solution for addressing health disparities, as there are numerous factors that lead to systemic inequality. An analogy Dr. Reeder-Hayes uses to explain the difference that patients can face is to imagine two people with similar athletic ability racing each other over the same distance and surface. Now, imagine that one runner has their arm tied behind their back and must jump over three boxes.
“We would expect that one person would win the race and it would be predictable which person that was. That’s not because of anything about the racecourse itself or anything about the person who's running the race, but about the barriers in between that person and the finish line,” said Dr. Reeder-Hayes. “That is how I think about the cancer journey for patients who are at any disadvantage, whether it's socioeconomic, neighborhood, location where they're getting their care, or distance to their care.”
Another common way to better understand health equity is to take a mass transit view of life expectancy, which can change based on neighborhood or subway stop. For example, life expectancy declines by 10 years and 6 months for every minute on the subway from midtown Manhattan to the South Bronx. In Chicago, the difference in life expectancy between the Chicago Loop and West Side is 16 years.6 In rural areas, patients with cancer often have to travel over 100 miles for cancer treatment; closures of hospitals and oncology practices risk further limiting access to care.
“One out of every six Americans live in rural areas and there is difficulty for these patients to access physicians,” said Dr. Pierce. “It's also difficult for physicians to maintain educational connections and stay current on oncology information, as well as connect with other physicians for consults when information is needed to adequately manage the care of their patients.”
Income and other socioeconomic circumstances are major factors in health inequity, and they have been exacerbated by the financial crisis generated by the pandemic. In the United States, 40 million people live in poverty, nearly 600,000 are homeless, and 2.3 million are in prisons or jails, where health services are limited. The lack of income contributes to other factors that are linked to poorer outcomes, such as access to transportation, healthy foods, and housing. In addition, 40% of the elderly population in the United States lives alone with very little outside support.7
“Providers should routinely incorporate geriatric assessments into evaluations of older patients so that they truly understand the barriers these patients face,” said Dr. Pierce. “We also need to have more training in geriatric oncology for our fellows because there are many issues unique to this patient population, and we need to better understand how best to provide high-quality care for our older patients as they often have cancer needs that are different from other patients.”
In 2009, ASCO released a policy statement committing to a multifaceted approach to eliminate these types of disparities and achieve equity in cancer care. Since then, the Health Equity Committee has advanced several initiatives stemming from this effort, including establishing a task force to address disparities in the care of older adult patients with cancer, issuing recommendations to increase participation of more diverse populations in clinical trials, and creating programs to improve access to care and quality of care in rural areas. ASCO has also issued guidance on reducing disparities in specific underserved communities, including sexual and gender minority populations, along with recommendations on lowering one’s risk for cancer with lifestyle interventions in areas such as obesity, alcohol and tobacco use, sun exposure, and HPV vaccinations.
Despite these efforts, there is still little data on which providers are treating underserved populations, what unmet needs remain, and how to better understand and support their needs and efforts in delivering cancer care. The lack of information makes it difficult to determine the level of progress being made towards reducing health disparities.
In August 2020, ASCO issued a new policy statement on health equity calling for bolder, more aggressive steps to achieve equity for all patients. That statement will serve as the blueprint for the Society’s 3-year health equity strategic plan.
“What we're really focusing on with that strategic plan is that it is not a list of things that the Health Equity Committee is doing, but a list of things that the organization is doing,” said Dr. Reeder-Hayes. “The committee's role is to support it, encourage it, bring ASCO membership awareness to it, and help the Society carry out the objectives in the plan.”
ASCO’s policy statement included recommendations that are intended to guide the work of the organization and other stakeholders, including medical training programs, health systems, payers, policymakers, and researchers. The recommendations fall into four main areas and comprise the goals of the strategic plan.
Goal 1: Addressing Structural Barriers
At a high level, most oncology professionals can see that inequity in health care is steeped in longstanding institutional and systemic bias, racism, and social injustice. Drilling down on how to address these barriers at a societal, community, and patient level is much more complicated since numerous factors play a role in disparities in care for just one individual. An ASCO effort is underway to fully determine the importance of social determinants of health (SDOH) and their impact along the cancer care continuum. SDOH are patient- and community-level variables, such as education, income, and geography, which are critical to assessing disparities and planning for interventions to promote equity. These variables may be useful for identifying practices where underserved populations cluster for care and could inform additional ASCO efforts.
“It is a well-known aspect of cancer care disparities that certain patients and often marginalized groups of patients cluster within certain practices, hospitals, and providers,” said Dr. Reeder-Hayes. “Also, patterns of care for all patients within those practices and hospitals are different than the patterns of care of patients in other hospitals.”
In 2021, ASCO will explore how to best address SDOH and understand how they can be integrated to eliminate disparities in cancer care. CancerLinQ’s pool of real-world data from practices across the United States will also help guide ASCO’s strategy in conducting future SDOH research. An analysis of the records of 477,613 patients with cancer from the beginning of January to the end of August 2020, presented at the 2020 ASCO Quality Care Symposium, demonstrates the insights that the CancerLinQ data can provide.8 The researchers found that Black patients with cancer were nearly twice as likely as white patients to have COVID-19, and Hispanic patients were more than five times as likely as non-Hispanic patients.
“CancerLinQ continues to gather data about people with cancer during this pandemic, which is critical to understand the risks to different populations and to help identify mitigation strategies,” said CancerLinQ medical director Robert S. Miller, MD, FACP, FASCO. “We can also help in better understanding barriers to care because our network of subscribing practices represents the diversity of cancer care delivery across the U.S., from physician-owned independent practices in rural settings to urban NCI-designated cancer centers to multistate integrated delivery networks to safety net hospitals.”
The Society is also providing its members with education on SDOH and their causes, as well as how best to discuss them with patients and colleagues. The ASCO eLearning Cultural Literacy course collection launched in September 2020 with five courses including Cultural Humility, Access to Cancer Care, Patient-Centered Cancer Care for Older Adults, Cancer Care for Transgender and Gender-Diverse Populations, and Cancer Care for Sexual Minority Populations.
Additionally, Dr. Pierce has led a new initiative focused on increasing oncologists’ understanding of SDOH and the impact on patients, as well as modifiable risk factors for cancer. To accomplish this, Dr. Pierce convened a focus group composed of trainee and early-career members. In October 2020, the focus group launched a monthly multimedia series featuring broadcasted videos through ASCO’s social media channels and ASCO eLearning podcasts, among other tools. The series’ first monthly episode featured a discussion on the basics of social determinants of health led by Dr. Pierce, Dr. Reeder-Hayes, and focus group members Abenaa M. Brewster, MD, MHS, and Ramy Sedhom, MD. Future episodes will feature expert-led discussions on topics such as how to take an SDOH history, implicit bias training, financial toxicities of care, and obesity and energy balance. To learn more about this series or to suggest a topic for future episodes, email ASCO Professional Development staff.
An additional, but major, component of this effort to address structural barriers is to create a more diverse oncology workforce to ensure physicians represent the patients they treat. In 2017, ASCO released a landmark strategic plan to guide future efforts for increasing racial and ethnic diversity in the oncology workforce. The plan has three primary goals that the Society is working towards fulfilling:
- Establish a longitudinal pathway for increasing workforce diversity.
- Enhance ASCO leadership diversity.
- Integrate a focus on diversity across ASCO programs and policies.
“We know that the percentages of racially, ethnically, and gender diverse providers are much lower than the numbers of the diverse patients with cancer,” said Dr. Pierce. “ASCO did an evaluation of this recently in the ‘2020 Snapshot: State of the Oncology Workforce in America,’ and 4.7% of oncologists are Hispanic or Latin(x), 3% are African American, 0.1% are American Indian or Alaska Native, and about 34% are female. In a perfect world, we would have a diverse workforce that mirrors the population we serve.”
As part of its ongoing work to increase diversity in the oncology workforce, ASCO is launching a pilot educational program for select U.S. medical schools to implement in summer 2021. The new Oncology Summer Internship is an immersive 4-week summer pilot program for rising second-year medical students from populations underrepresented in medicine. The curriculum will provide an in-depth introduction to the field of oncology, provide exposure to oncology faculty through shadowing and mentoring, and cultivate community among students from underrepresented populations through social events. The program will be implemented at select medical schools annually; to assist in the program implementation, ASCO will offer student stipends and funds to defray the institutions’ program costs.
Goal 2: Increasing Awareness and Action
In 2021, ASCO will launch an awareness campaign to increase visibility and interest in the importance of equitable delivery of cancer care. This will include increased engagement with members, patient advocates, local governments, academia, and health systems and payers to not only raise awareness, but develop collaborations focused on eliminating inequities in cancer care.
“It's our job as leaders within the organization to give people action steps in which they can participate,” said Dr. Reeder-Hayes. “That could be raising their level of knowledge about a certain health policy at a state or national level, putting a toolkit in their hands that they can use in their clinical practice to respectfully and accurately ask about and document information about patients’ social determinants of health, or providing better educational material about cultural literacy and humility.”
Goal 3: Ensuring Equitable Access to High-Quality Care
The Society has worked for years to help practices in underserved communities improve the quality of care that they offer, having provided grant funding for them to participate in quality improvement initiatives, such as the Quality Oncology Practice Initiative (QOPI). ASCO is taking these efforts further by charging its Effectively Serving the Underserved Task Force with developing and executing a strategy to identify and understand the needs of providers who deliver care for underserved populations and communities to improve access and quality of care. The task force is also charged with presenting recommendations to the ASCO Board regarding specific ways to address the needs of providers serving the underserved.
“One of the things [task force members] are working on right now is to solicit feedback from providers in underserved communities for what they need to provide equitable care and how ASCO can help them meet those needs,” said Dr. Pierce. “The task force is working with the state societies who may be able to help identify many of these providers who could then give their feedback.”
Goal 4: Ensuring Equitable Research
The final goal is that cancer research fully reflects the diversity of patients affected by cancer, with specific attention being directed to underrepresented communities. ASCO seeks to do this in a number of ways, the first being to fund research in this area. Conquer Cancer, the ASCO Foundation, offers several grants for underrepresented populations in medicine for both individuals in the transition from fellowship to faculty and investigators in their first faculty appointment. Conquer Cancer also provides an Advanced Clinical Research Award for Diversity and Inclusion that is open to applicants who identify as a member of a racial/ethnic group underrepresented in medicine.
“The health equity-focused grants from Conquer Cancer are really advancing two things simultaneously that I think are exciting,” said Dr. Reeder-Hayes. “One is explicit and dedicated support for research around cancer equity, but the other is support for providers and researchers who themselves are from underrepresented minority backgrounds.”
Another aspect of this effort is to broaden clinical trial eligibility to more fully reflect the diversity of people at risk for or living with cancer. Recent analyses of cancer treatment trials found that only 4% to 6% of trial participants are Black and 3% to 6% are Latin(x), while these populations represent 15% and 13% of all patients with cancer, respectively.9,10 ASCO and the Association of Community Cancer Centers (ACCC) have been working together to increase participation of minority populations that continue to be underrepresented in cancer research when compared with the overall population of patients with cancer. ASCO and ACCC have called on the cancer community to submit novel strategies and practical solutions to achieve this. The ideas submitted may be implemented and evaluated through the ASCO Targeted Agent and Profiling Utilization Registry (TAPUR) Study, a clinical trial that studies how targeted therapies perform outside of their U.S. Food and Drug Administration-approved indication in patients with advanced cancer.
“TAPUR has broad eligibility criteria that eliminate some of the barriers to enrollment faced by patients with multiple comorbidities, as well as an assessment schedule that aligns with routine clinical care and offers flexibility to patients,” said ASCO chief medical officer and executive vice president Richard L. Schilsky, MD, FACP, FSCT, FASCO. “As we select clinical sites to participate in TAPUR, we consider the diversity of the patient population they serve as an important selection criterion. Taken together, these strategies have resulted in enrollment of patients who are more representative of the U.S. population than is the case in many clinical trials.”
An Enduring Commitment Within and Beyond ASCO
ASCO is already underway in carrying out its mission within the cancer community and also within the organization itself. The Society established a staff-led Equity, Diversity, and Inclusion Task Force to guide and improve ASCO initiatives designed to promote a culture of these values within the workplace.
Within ASCO, the cancer community, and society as a whole, the charge to achieve health equity will be a continued effort even as progress is made.
“The mission of creating health equity is firmly embedded in ASCO, and we will continue to address these issues,” said Dr. Pierce. “This is not a short-term goal. It is something that will require constant attention and constant commitment, and ASCO is all in.”
- Siegel RL, Miller KD, Jemal A. Cancer statistics, 2019. CA Cancer J Clin. 2019;69:7-34.
- DeSantis CE, Siegel RL, Sauer AG, et al. Cancer statistics for African Americans, 2016: Progress and opportunities in reducing racial disparities. CA Cancer J Clin. 2016;66:290-308.
- Henley SJ, Anderson RN, Thomas CC, et al. Invasive cancer incidence, 2004-2013, and deaths, 2006-2015, in nonmetropolitan and metropolitan counties – United States. MMWR Surveill Summ. 2017;66:1-13.
- Singh GK, Jemal A. Socioeconomic and racial/ethnic disparities in cancer mortality, incidence, and survival in the United States, 1950-2014: Over six decades of changing patterns and widening inequalities. J Environ Public Health. 2017;2017:2819372. Epub 2017 Mar 20.
- Boyd RW, Lindo EG, Weeks LD, et al. On Racism: A New Standard for Publishing on Racial Health Inequities. Health Affairs Blog. Epub 2020 Jul 2.
- Marmot M. The Health Gap: The Challenge of an Unequal World. London/New York: Bloomsbury; 2015.
- Berwick DM. The Moral Determinants of Health. JAMA. 2020;324:225-6.
- Potter D, Riffon M, Kakamada S, et al. Disproportionate impact of COVID-19 disease among racial and ethnic minorities in the U.S. cancer population as seen in CancerLinQ Discovery data. J Clin Oncol. 2020;38 (suppl 29; abstr 84).
- Loree JM, Anand S, Dasari A, et al. Disparity of Race Reporting and Representation in Clinical Trials Leading to Cancer Drug Approvals From 2008 to 2018. JAMA Oncol. 2019;5:e191870.
- Duma N, Vera Aguilera J, Paludo J, et al. Representation of Minorities and Women in Oncology Clinical Trials: Review of the Past 14 Years. J Oncol Pract. 2018;14:e1-e10.