By Carol Y. Ochoa, PhD, MPH, Tricia Kalwar, MD, MPH, and Narjust Florez, MD
This story is one example of a Spanish-speaking Latina immigrant patient seeking medical care in the United States:
Hearing the news was devasting. Maria, 36, never imagined hearing the words, “El resultado de su prueba es positive, desafortunadamente, el estudio dice que es cancer de mama en etapa III” [“Your test result is positive, unfortunately, it is breast cancer stage III”]. Maria sat in the doctor’s office for 15 more minutes while she reviewed her treatment options. Feeling the urgency, she asked the doctor to book her surgery as soon as possible. Once her appointment was over, Maria walked out of the office and proceeded to cry. She was scared and angry. It had taken over a year to get her diagnosis since she first felt the lump in her breast. There were many challenges: finding a clinic near her with Spanish-speaking providers, getting an appointment, taking time off work, transportation (she didn’t own a car and relied on public transit to get to her appointments), and getting her insurance approval. She was a Medicaid beneficiary, which provided her with health insurance, but presented its own challenges in receiving timely health care. Unfortunately, following her diagnosis, Maria experienced more challenges, from the long and difficult chemotherapy to the physical issues that developed with her body, as well as depression, fear, and the financial stressors it created for her family.
The Hispanic/Latinx community comprises a heterogeneous group of people with various racial makeups, national origins, genetic ancestry, environmental exposure, and acculturation who share cultural similarities and differences.1 More than 62 million Hispanic/Latinx people reside in the United States (U.S.), representing nearly one in five residents, which means they make up the country's second-largest racial/ethnic group. Despite such a large representation, there are substantial disparities in medical care and knowledge across the care continuum.2
In the May 2021 issue of JCO Oncology Practice (JCO OP), a Special Series focused on disparities in cancer care for Black people in the United States. In 2022, a second Special Series was published in JCO OP, focusing on disparities in cancer care for Hispanic/Latinx people. These racial group examinations are necessary to evaluate the unseen aspects that contribute to the visible decreased cancer outcomes for these vulnerable communities. The Hispanic/Latinx series evaluates the impact of language, health insurance coverage, immigration, and access to care on the patient experience and health outcomes.
The factors described in the JCO OP series are largely known as social determinants of health (SDOH), which are defined by a consensus of ASCO’s Social Determinants of Health Task Force as “the non-medical factors that influence health outcomes, research participation, and how patients/families navigate cancer care.”3 SDOH are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaped by the distribution of money, power, and resources at global, national, and local levels. Maria’s story highlights the various SDOH factors that created inequities in her cancer care experience and influenced her health outcomes. If the conditions and resources of Maria’s circumstances were different, then she likely would have received timely care, had a better prognosis, and experienced better survivorship outcomes.
Cancer accounted for the death of nearly 24,000 and 23,000 Hispanic/Latinx people, respectively, in 2021, making it the leading cause of death for this population. The cancer mortality rates in this population are lower than for non-Hispanic white patients; yet, the documented burdens that this community experiences navigating the cancer care delivery system and the disparities they experience in outcomes related to cancer prevention, detection/diagnosis, treatment, and survivorship are significant.1 The disparities for Hispanic/Latinx patients range from screening to high-quality cancer care, as well as low appropriate cultural and linguistic health literacy.2 The JCO OP series highlights issues related to the inequitable access to and enrollment in clinical trials, personal understanding of complex comorbidities, and workforce diversity.
By 2030, approximately 20% of people in the U.S. will self-identify as Hispanic/Latinx; however, only 4.7% of practicing oncologists are Hispanic/Latinx.4 It is well documented that increased workforce representation improves patient experience and outcomes. This lack of workforce diversity can pose unique issues for patients with limited English proficiency. Hispanic/Latinx physicians are more likely to speak Spanish and care for Hispanic/Latinx and Black populations. Additionally, language concordance is associated with higher reported patient overall quality of care. However, there are documented challenges to improved workforce diversity including financial barriers, lack of role models, barriers with lack of support, implicit and explicit discrimination, and bias.3 While the cancer care/research field has talked about the importance of diversity for decades, there remains little change in the actual number of Hispanic/Latinx cancer care providers and researchers.
The Role of Social Determinants of Health
Arguably the primary SDOH that much of the JCO OP series focused on were the factors of where individuals were born and work and, by extension, their health insurance coverage. There is a consensus that lack of health insurance coverage or underinsurance is associated with health care delays and poorer health outcomes. A U.S. population-based analysis demonstrated that despite the increase in health insurance coverage, there continued to be ongoing health inequities pre- and post-implementation of the Affordable Care Act (ACA).5 Specifically, Hispanic/Latinx patients reported difficulty finding providers who accept their type of health insurance, language barriers to routine or ongoing care, and higher rates of cancer.
Hispanic/Latinx are more likely to live in low-income neighborhoods and this has been associated with later stage of cancer diagnosis and worse cancer survival.6 The Hispanic/Latinx JCO OP series also highlighted that Hispanic/Latinx patients in the U.S. have an increased likelihood of living in poverty, having limited access to health care, and living along the U.S.-Mexico border, all of which affect cancer outcomes.1,7 Yet, much more research is needed to fully understand the impact of SDOH on cancer care, as the pathways from where individuals live, their access to and quality of food, housing, and transportation, as well as the safety of their neighborhood environment to their cancer-related outcomes have yet to be fully explicated. For example, in Maria’s case, one of the barriers she experienced was transportation challenges, as she did not have a car and depended on public transit, which impacted her ability to get to and from work to the clinic in a timely manner.
We continue to see a lack of representation of Hispanic/Latinx patients in clinical trials,4 but often forget that participating in clinical trials comes with additional visits and more out-of-pocket expenses (lodging, meals, etc.). For a patient population that is already struggling with the financial aspects of cancer care, participating in a clinical trial without additional support is not always feasible. It is not that our Hispanic/Latinx patients do not want to participate in a study, but they often cannot afford it. We need sponsors and institutions to provide support to patients who are interested in enrolling in a trial but need financial assistance to do so.
Health Care and Communication Experiences for Hispanic/Latinx Patients
Language use and English proficiency among Hispanic/Latinx people have previously been associated with health status and access to care.6 In the context of cancer care, improving the workforce representation of Hispanic/Latinx physicians and other health care providers may help to reduce these health disparities.4 Hispanic/Latinx physicians are more likely to speak Spanish, which greatly benefits patients with limited English proficiency as they are more likely to understand the content from their medical visits. Patient-provider language concordance in Spanish is also associated with fewer ER visits and decreased medical errors.
Beyond language barriers, understanding health care beliefs and practices is a quality that physicians with similar backgrounds provide to Hispanic/Latinx patients. Feeling understood by your health care team has long-lasting benefits, including compliance with medication regimens, lower hospitalization rates, and improving the negative perception that many populations of color have towards the U.S. health care system. In Maria’s story, we saw that it was important for her to receive care by a doctor that also spoke Spanish. Shared language meant that Maria would be able to communicate with her doctor directly, without the need for an interpreter.
Cancer care communication continues to be important after diagnosis. In the case of young adult childhood cancer survivors, a triad of communication should occur among the survivor, caregiver, and medical provider, especially regarding follow-up care. However, Ochoa et al found that communication about cancer care was lacking in nearly half of the study sample.8 This was concerning because childhood cancer survivors were, on average, around the typical age for transfer from the pediatric to the adult care setting. Yet, this study also suggested that triads in which caregivers were Spanish-speaking tended to engage in more comprehensive communication with Hispanic/Latinx childhood cancer survivors, which was also associated with being more likely to have received adequate follow-up care.
Communication issues for patients navigating cancer care are also vary for Hispanic/Latinx patients depending on whether they live near the U.S.-Mexico border or not. Ju et al examined Texas border county residents, consisting of predominantly Hispanic (with 32% being foreign-born) and lower-income populations.9 The authors found that border county residents with gastric cancer were less likely to receive guideline-concordant care and had significantly worse survival outcomes than non-border county residents; they asserted that border county patients' limited English fluency contributed to communication barriers and lower quality of care.
Intersection of Race and Ethnicity
The racial and ethnic diversity in the Hispanic/Latinx population is highlighted in Espinoza-Gutarra et al’s article on Hispanic/Latinx underrepresentation in cancer clinical trials.1 In particular, the article highlights the varied national origins, racial makeup, genetic ancestry, modifiable cancer risk factors, environmental exposures, and acculturation present in this population. Champion et al further discussed the intersection of race and ethnicity as it relates to trends and outcomes for Hispanic women with breast cancer.10 They noted that there was a stark difference in the incidence of triple-negative breast cancer and nodal status between Black Hispanic women (Afro-Latinas), Hispanic white women, and non-Hispanic Black and white women. These findings have real-world implications in that Hispanic women have historically been treated as one homogenous group without accounting for genetic, cultural, and geographic heterogeneity. The Hispanic/Latinx population can also be further characterized by country of origin and place of birth.11 Given national origins, racial makeup, and genetic ancestry diversity of the Hispanic/Latinx population and the implications of the resulting variability, it is important to disaggregate racial and ethnic data in future research on breast cancer and other malignancies to accurately predict outcomes and potentially impact recommended treatment.
The JCO OP series on “Disparities in Cancer Care for Hispanic-Latinx People” highlights the cultural, economic, linguistic, and SDOH factors that inform the Hispanic/Latinx community’s experience in cancer care. We started this discussion by presenting a vignette about Maria, a patient with multiple social and structural factors impacting her health and how she navigated cancer care and survivorship. The Hispanic/Latinx population living in the U.S. continues to face many challenges, including high uninsured rates, lack of representation in oncology clinical trials, poor access to health care, and discrimination and biases. It’s our responsibility to ensure equitable care to all patients with cancer regardless of their racial/ethnic background and socioeconomic status. The time is now for equity in cancer care.
Dr. Ochoa is an NCI K00 postdoctoral fellow and trainee member in the Moores Cancer Center at the University of California San Diego. She uses a mixed-method approach in her research to focus on cancer survivorship, informal caregiving, and cancer screening to explore whether there are any racial/ethnic differences, the role of social determinants, and specific cultural factors that may be related to health outcomes. Follow Dr. Ochoa on Twitter @ochoa_cy. Disclosure.
Dr. Kalwar is the section chief of Hematology and Oncology at the Miami VA Hospital. She has an MPH with a concentration in epidemiology. She provides hematology and oncology care to veterans along with her interests in teaching and addressing health care disparities. Dr. Kalwar is a member of the ASCO Social Determinants of Health Task Force. Disclosure.
Dr. Florez is the associate director of the Cancer Care Equity Program and a thoracic medical oncologist at Dana-Farber Cancer Institute and a member of the faculty at Harvard Medical School. Her research focuses on women with lung cancer, lung cancer survivorship, cancer health disparities, and social justice in medicine. Dr. Florez is a member of the ASCO Social Determinants of Health Task Force. Follow her on Twitter @NarjustFlorezMD. Disclosure.
- Espinoza-Gutarra MR, Duma N, Aristizabal P, et al. The Problem of Hispanic/Latinx Under-Representation in Cancer Clinical Trials. JCO Oncol Pract. 2022;18:380-4.
- Bosserman LD, Duma N, Villalona-Calero M, Lopes G, Cinar P. Disparities in Cancer Care and Scientific Knowledge in Hispanic/Latinx People in the United States. JCO Oncol Pract. 2022;18:367-9.
- Tucker-Seeley R, Shastri SS. Integrating Social Care Into Cancer Care Delivery: Are We Ready? ASCO Daily News. Jun 15, 2022. Accessed Aug 25, 2022.
- Duma N, Velazquez AI, Franco I, et al. Dónde Están? Latinx/Hispanic Representation in the Oncology Workforce: Present and Future. JCO Oncol Pract. 2022;18:388-95.
- Franco I, Olazagasti C, Osman F, et al. Proyecto ELEVAR: Evaluating the Latinx Experience With the Health Care System Through Variables on Access and Resources. JCO Oncol Pract. 2022;18:e814-e826.
- American Cancer Society. Cancer Facts & Figures for Hispanics/Latinos 2015-2017. Atlanta: American Cancer Society; 2015.
- Nodora J, Velazquez AI. Are Quality Cancer Prevention and Treatment Along the Texas US-Mexico Border Achievable? JCO Oncol Pract. 2022;18:385-7.
- Ochoa CY, Cho J, Miller KA, et al. The Impact of Hispanic Ethnicity and Language on Communication Among Young Adult Childhood Cancer Survivors, Parents, and Medical Providers and Cancer-Related Follow-Up Care. JCO Oncol Pract. 2022;18:e786-e796.
- Ju MR, Wang SC, Mansour JC, et al. Disparities in Guideline-Concordant Treatment and Survival Among Border County Residents With Gastric Cancer. JCO Oncol Pract. 2022;18:e748-e758.
- Champion CD, Thomas SM, Plichta JK, et al. Disparities at the Intersection of Race and Ethnicity: Examining Trends and Outcomes in Hispanic Women With Breast Cancer. JCO Oncol Pract. 2022;18:e827-e838.
- Green SR, Rodriguez G, Soto-Perez-de-Celis E, et al. A Global Approach to Cancer Equity in the Hispanic/Latinx Population. JCO Oncol Pract. 2022;18:371-3.