Racial disparities in cancer care ‘don’t go away in survivorship’
Having cleared a major hurdle by completing active treatment, cancer survivors often find themselves unprepared for the ongoing challenges they face during survivorship.
Financial toxicity, difficulty accessing medications and arranging follow-up appointments, psychosocial issues and risk for second cancers are just some of the concerns that may emerge in the wake of even the most positive outcomes.
For members of racial and ethnic minority groups, many of whom have struggled with disparities throughout their lives, inequity in cancer survivorship may be no surprise.
“From screening to diagnosis, and from diagnosis to treatment, there are racial disparities,” Vivian J. Bea, MD, FACS, section chief of breast surgical oncology at New York-Presbyterian Brooklyn Methodist Hospital and assistant professor of surgery at Weill Cornell Medicine, said in an interview with Healio. “These disparities don’t go away in survivorship; there continue to be multiple issues across the continuum of care.”
Psychosocial challenges often faced by cancer survivors may be exacerbated in populations less able to access relevant resources.
“We need to be very vigilant in identifying patients who could benefit from mental health support systems across the continuum of their care,” Bea said. “We have to assess these patients all the way through their treatment, and then during survivorship, to see whether they need this psychosocial support. We then would refer them to either a psychologist or a psycho-oncologist or psychiatrist. The importance of this can’t be overstated.”
Many of the issues cancer survivors face are similar to those they dealt with when they began treatment, according to Bea.
“Some of our survivors still have issues with lack of insurance, lack of access to providers who reflect their culture or inability to afford their medication,” she said. “Some of our survivors are dealing with other quality-of-life issues that may not have been well-addressed.”
According to Evelyn Robles-Rodriguez, DNP, APN, AOCN, director of outreach, prevention and survivorship and oncology advanced practice nurse at MD Anderson Cancer Center at Cooper, Cooper University Health Care, survivors in underrepresented communities grapple with the same mental health issues as those more readily able to access care for these issues.
“Survivors in our Latino and African American communities have the same emotional burdens as other survivors, including fear of recurrence, anxiety and depression,” Robles-Rodriguez said. “Sometimes they don’t have the ability to address them, because there are so few providers who can understand the nuances of their culture.”
The scarcity of minority providers at many treatment institutions can lead to a lack of trust in or comfort with providers who do not reflect a patient’s culture. Bea, who is Black, said patients and survivors appreciate her institution’s diverse staff.
“I can’t tell you how many times we’ve had patients come in for a second opinion, or maybe have refused therapy because they didn’t trust the system. For these patients, seeing a provider who looks like them has made all the difference in the world,” Bea said. “It’s the same thing as it relates to survivorship. Survivorship is a lifelong relationship, and you need to be able to trust the people who are taking care of you.”
Genetic, biological factors
Minority cancer survivors may be at increased risk for poor outcomes or recurrence due in part to genetic and biological factors.
According to the NCI, Black/African American patients with cancer have higher rates of mortality than all other racial/ethnic groups across most cancer types. Additionally, Black women with breast cancer are at higher risk for death than their white counterparts, despite comparable incidence rates.
“It starts at the moment of screening and continues with the more aggressive tumor biology Black patients have,” Robles-Rodriguez said. “Also, both Latinas and Black women have more comorbid conditions like diabetes and also are more likely to be obese.”
Genetic and biological differences also seem to drive some racial disparities in pediatric cancers.
Smita Bhatia, MD, MPH, director of the Institute for Cancer Outcomes and Survivorship, the Gay and Bew White endowed chair in pediatric oncology, and professor and vice chair of the department of pediatrics at The University of Alabama at Birmingham School of Medicine, used the example of acute lymphoblastic leukemia, which is the most common pediatric cancer, to understand the causes of racial/ethnic disparities in childhood cancer outcomes. Bhatia said Asian patients and white patients have similar survival rates, which are lower among Hispanic patients and worst among Black patients.
“It’s a complex combination of factors,” Bhatia said in an interview with Healio. “A fair amount of research has shown that genetics play a role, as Hispanic patients have a component of disease biology that doesn’t respond as well to treatment. African American patients also present with more aggressive disease.”
Racial and ethnic disparities also have been observed in adherence to treatment, according to Bhatia. In a study of patients with ALL aged younger than 21 years, Bhatia and colleagues evaluated compliance with the last 2 years of treatment.
“[This treatment consisted] of oral chemotherapy pills that the patients need to take at home on a daily basis,” Bhatia said. “Using electronic monitoring, we found that Hispanic, Black and Asian children were more likely to forget to take their pills, or not open those medication bottles, compared with the non-Hispanic white children.”
The reasons for this reduced adherence include “forgetting to take the medications” and lack of parental vigilance. Moreover, Bhatia said there appears to be an association between this disparity and survival among these patients.
“Race and ethnicity are complex and composite terms; they encompass structure, health literacy, trust of the system, cultural beliefs and language barriers,” Bhatia said. “We found that patients who come from lower socioeconomic status households, where there may be a single mother looking after multiple children, or whose families haven’t formed a team to care for these pediatric patients, are more likely to forget their medications. That accounts for part of these differences, but it doesn’t explain it fully.”
Robles-Rodriguez said in some cases, oncologists may be unaware of noncompliance among their minority cancer survivors.
“Women on hormonal therapies, unfortunately, can’t always afford these medications,” Robles-Rodriguez said. “Sometimes these patients are telling us they’re taking these medications when they might not really be taking them.”
Additionally, she noted that Black women appear to undergo cancer screening less frequently than women of other races.
“We’re working on a couple of studies here at Cooper regarding the fact that our Black women are not being screened more often, especially our older Black women,” she said. “We don’t know why, but there are many socioeconomic and other determinants of health that can compete with screening appointments.”
These competing priorities may leave minority cancer survivors with a difficult choice between making a living and maintaining their health, according to Dianne L. Hyman, MSN, RN, OCN, CN-BN, oncology transition care navigator at MD Anderson Cancer Center at Cooper, Cooper University Health Care.
“As with anything, when a patient is low income, they might have to decide between paying the rent or getting a screening,” Hyman said. “When they need to go to work, going for their mammogram screening might no longer be their top priority.”
Language barriers are another obstacle for members of certain minority groups. Robles-Rodriguez said MD Anderson Cancer Center at Cooper makes a concerted effort to reflect the community and its diverse cultures and languages.
“A lot of my Spanish-speaking patients and survivors love to come see me because I’m ready to have that one-on-one conversation in their language,” she said. “I think that’s important, having a few bilingual providers who can communicate — not just in Spanish, but in other languages spoken in the community.”
Robles-Rodriguez said that although her institution uses trained, qualified translators, they may not be able to provide the level of nuance and understanding needed for non-English speaking patients and survivors to converse comfortably about cancer.
“There are always those issues that are difficult to communicate through a translator,” she said. “I would say the satisfaction of care is decreased when the communication with the provider has to be through our translator for people who don’t speak the language.”
Implicit bias is a known obstacle to equity in clinical trial accrual and cancer treatment. This can extend into survivorship, Bea said, and may prevent minority survivors from receiving quality follow-up care.
She cited an approach her institution uses to prevent implicit bias in cancer clinical trial enrollment. At her hospital, members of a multidisciplinary tumor board review the files of patients with breast cancer before the start of treatment.
“The board looks at imaging and pathology of the case and then comes up with an individualized treatment plan for that patient,” she said. “Part of that treatment plan pertains to what clinical trials are available at this institution that may be suitable to the patient, without the background noise of their socioeconomic status or insurance challenges. We just look at the patient on a plain sheet of paper and decide what trials they might qualify for.”
By reducing the opportunities for implicit bias and increasing racial and ethnic representation, institutions can improve the minority cancer care experience from screening to survivorship, according to Bea.
“The first step is to recognize that, historically in the United States, racism exists,” she said. “It continues to exist in, and contribute to, poor outcomes. The medical apartheid, if you will, that Black individuals have experienced has led to mistrust. So, another way to combat this is to have representation of physicians of color who look like the people they treat.”
Filling the void
Instilling a sense of community and familiarity in the care of marginalized patient populations can go a long way toward not only healing a patient’s cancer, but also healing racial divides. Bea said nurse navigators are an essential part of outreach to historically underrepresented patients with cancer and survivors.
“You have to have a system and a point person in place to connect these resources, because you can’t assume that survivors will be aware that they are available,” she said. “As physicians who take care of patients, we know that cancer treatment needs to be multidisciplinary. One component of that is having navigation support.”
Robles-Rodriguez agreed that making survivors aware of the services and resources available to them can make all the difference in ensuring ongoing health and financial stability.
“For example, some of my survivors were paying $150 a month for tamoxifen,” she said. “We know there are programs where a patient can get that drug for $5 to $10 a month. Part of what we do is make sure they know that these programs are available.”
Hyman, who leads a support group for minority patients with and survivors of breast cancer called “Sister, Will You Help Me?” said simply being able to communicate with and relate to these women makes a huge difference.
“It’s a place for women to come and encourage each other as they’re going through their cancer journey and survivorship,” Hyman said. “There are women who continue to come here all these years after they’ve finished treatment. They come back and provide help and encouragement to women who are still going through it.”
- Bhatia S, et al. Blood. 2002;doi:10.1182/blood-2002-02-0395.
- NCI. Cancer disparities. Available at: https://www.cancer.gov/about-cancer/understanding/disparities. Accessed March 15, 2021.
For more information:
Vivian J. Bea, MD, FACS, can be reached at email@example.com.
Smita Bhatia, MD, MPH, can be reached at firstname.lastname@example.org.
Dianne L. Hyman, MSN, RN, OCN, CN-BN, can be reached at email@example.com.
Evelyn Robles-Rodriguez, DNP, APN, AOCN, can be reached at firstname.lastname@example.org.