By Bill Thomas | June 17, 2024
Here at the Pediatric Cancer Research Foundation, our mission is to help accelerate scientific breakthroughs in hopes of someday reducing the number of children who die from cancer to zero. We know there are many challenges that need to be overcome before we can achieve this goal, however, and that not all of those challenges are universal.
It’s important for everyone–healthcare providers, donors, researchers, educators, advocates, and beyond–to be mindful of the ways in which pediatric cancer survival isn’t simply dependent on medical science. So often, it’s also a matter of socioeconomics.
In November of 2023, the Center for Disease Control released a report that analyzed pediatric cancer death rates over a 20-year period, spanning from 2001 to 2021. Its findings? During the first ten years, death rates for white, Black, and Hispanic youths all decreased more or less equally. After 2011, however, only the death rate for white patients continued to decrease. As of 2021, the death rate per 10,000 patients was 2.38 for Black youths, 2.36 for Hispanic youths and 1.99 for white youths.
That CDC report isn’t alone in its findings. A 2021 study by the American Cancer Society similarly found that Black and Hispanic pediatric cancer patients had worse survival rates than white patients for all cancers combined, leukemias and lymphomas, brain tumors, and solid tumors. The study looked at data from patients under the age of 18 who were first diagnosed with cancer between 2004 and 2015.
Altogether, current data suggests that the drastic difference in patient outcomes for Black and Hispanic patients versus outcomes for white patients is not primarily a product of differences in genetic predisposition. So, then, what causes these health inequities? Why has progress stalled for Black and Hispanic youths? And, most importantly, what can we do to rectify this?
What Causes Health Inequities in Pediatric Cancers?
“Nearly 16,000 children are hospitalized in 250 children’s hospitals each day in the United States, and they all deserve the highest standard of care possible. Unfortunately, the prevalence of institutional racism in this country extends into the world of healthcare and prevents too many children from getting the care they need and deserve,” Erin Behen says.
Behen is a Certified Child Life Specialist previously at Seattle Children’s Hospital in the Hematology and Oncology Department as well as at Fred Hutch Cancer Center for proton radiation. As such, she’s seen firsthand how socioeconomic factors affect the level of care that Black and Hispanic patients receive.
“There are many contributing factors to inequities in healthcare,” Behen explains. “Stagnant cancer survival rates for Black and Hispanic children reflect the many barriers to full equity that they face outside of the hospital.”
Behen’s opinions are backed up by hard data. In 2023, a study conducted by researchers at the University of California, San Francisco concluded that the financial burden of pediatric cancer diagnoses disproportionately affects low-income and Hispanic families. Likewise, a paper by economists from Ohio State University, the Economic Policy Institute, and Duke University, found that, even when accounting for education, Black workers are underrepresented in high-wage positions.
A separate study by the National Bureau of Economic Research found that job applicants with distinctively Black names are 10% less likely to be contacted by employers regardless of their education, experience, or skills. The result of such inequitable hiring practices is that Black and Hispanic families often have lower rates of employment in jobs that offer health coverage. This ultimately makes healthcare less accessible and more expensive.
The medical field itself isn’t immune to institutional racism, either. According to a paper by researchers at the Yale School of Medicine, Black and Hispanic students are more likely to experience recurrent mistreatment while attending medical school. Of those students who report feeling discriminated against, around 4% will discontinue their enrollment. This contributes to a diminished diversity among medical practitioners, with the American Association of Medical Colleges reporting that nearly 64% of active physicians in the U.S. today are white.
In 2022, the Gallup Center for Black Voices conducted a poll of Black Americans. Of the respondents, 53% said they had difficulty finding a doctor of the same racial background. The same respondents reported having negative experiences with their providers and were overall less likely to express satisfaction with their level of care.
“For us to be able to communicate with them and treat them effectively, we have to build trust,” Riley Coyle, a Certified Child Life Specialist in the Cancer and Blood Disorder Center at Seattle’s Children, explains.
“Patients need to be able to feel vulnerable with their medical team in a sense–feeling safe in asking clarifying questions, sharing their values, and communicating grievances–which can be really difficult. When someone who identifies as a minority comes into a healthcare institution, they’re usually very aware of the disparities and biases that exist. Patients come in thinking ‘I might not be treated as well as my white counterparts,’ and there is validity to their concerns. We have to recognize that and meet them where they are at.”
The Path to Overcoming Health Inequities
Although the causes of health inequity are deeply rooted in the structures and systems of American society, that doesn’t mean they’re insurmountable. The more we learn, the better equipped we are to correct such injustices, and progress is being made.
In 2019, after their attempts to reduce central line-associated bloodstream infections (CLABSI) stalled for Black patients and patients who speak languages other than English, researchers at Seattle Children’s decided to take a closer look at why that was. They discovered that there was no biological reason for the disparity; instead, these patients were simply receiving less care and maintenance from their medical teams.
To correct this, Seattle Children’s launched a series of corrective measures. This included making all units aware of the disparity, creating a new specialized nursing position centered around central line placement and safety, and producing multilingual education materials for patients and their families. The result? Seattle Children’s not only reduced CLABSIs in Black patients and patients who speak languages other than English, but also eliminated the gap in infection rates between those patients and white and English-speaking patients.
“In the last several years, Seattle Children’s has created a step-by-step process to reduce levels of disparity in a lot of different ways. I think other institutions could take a page from that book,” Coyle says, pointing out that the hospital’s CLABSI initiative is just one part of ongoing, institution-wide efforts.
“Hospitals need to look at their current practices, then look at the numbers to see if their practices are perpetuating race-based disparities. If so, the question should be ‘How do we as an institution change our process to make sure the care our patients receive is equitable?’ I think one concrete step that institutions can take is to include more psychosocial funding, to offer more support through social work, behavioral support specialists, child life specialists, and ethicists who can ensure equity.”
Even still, individual institutions can only do so much. Because these disparities are inextricably linked to broader societal inequalities, eliminating health inequities in pediatric cancer research and treatment necessitates addressing the structural biases and systemic prejudices that underpin those sociopolitical factors.
“Change does not necessarily require everyone to participate. But transformation? That requires active engagement both from institutions and from society at large,”
Eunice Soh, a Health Equity and Diversity Consultant at Seattle Children’s Center for Diversity and Health Equity, says.
“Healthcare is really just a tiny percentage of everything that impacts a person’s wellness. It’s important for us to start treating patients in a way that engages with their whole humanity and their whole selves. That means thinking about food access, housing, work, and all the different factors that contribute to their well-being. Health and health inequities are ultimately at the intersections of many different factors, from the macro to the micro. If we start segmenting them to focus solely on things at an institutional level, we’re missing the bigger picture,” Soh concludes.
