Landmark new research reveals a higher leukaemia risk for Latino and Hispanic children in the US, underscoring a need for targeted care and culturally sensitive outreach. Addressing genetic and social factors is crucial to reducing inequities.
Research reveals a higher leukaemia risk for Latino and Hispanic children, underscoring a need for targeted, culturally sensitive care. Photo: Charlein Gracia
Acute lymphoblastic leukaemia, or ALL, is the most common type of cancer found in children and comprises around 25% of all paediatric cancers in the US, according to the United States National Institutes of Health’s National Cancer Institute. It is found most regularly in children from the ages of one to four. Globally, leukaemia accounts for 32.5% of all cancers in children from infancy to 14 years, according to 2018 figures.
As with all cancers, paediatric ALL affects some groups worse than others, underscoring entrenched inequalities in outcomes and care.
Research over the past decade sheds particular light on how this disease impacts Latino and Hispanic children in the US, with a 2023 review in Frontiers in Oncology reporting that American Hispanic and Latino children have about 30 to 40% increased risk of developing ALL than non-Hispanic white children, and twice the risk of Black American children.
Recent research has tried to explain why these numbers are so high. A study out this year from the Keck School of Medicine of University of Southern California (USC) pinpointed a genetic variant that may contribute to the elevated presence of ALL among these populations.
This kind of research is crucial in helping pave the way for future targeted screenings and interventions, but it doesn’t tell the whole story. In addition to these genetic causes for why one person might develop one form of cancer over another, environmental and socioeconomic factors also contribute to disease disparities.
Also of critical importance is the reality that Hispanic and Latino children are not a monolith. They are part of a melting pot of communities and cultures, with children of Hispanic and Latino heritage in the US possessing a wide range of Latin American, African, European, and Indigenous American backgrounds and associated genetic ancestries.
Historically, disparities in healthcare have also been caused by the lack of outreach and enrollment of Hispanic and Latino people in research studies, far-from-inclusive educational outreach, and overall structural flaws in US healthcare and policy.
As more research into ALL in Hispanic and Latino children comes to the forefront, it poses a pressing question: How can a holistic approach that considers genetic factors and social determinants of health create a better outlook for these children diagnosed and living with leukaemia?
Genetic variants drive disparities in leukaemia risk
In 2021, a research team at Loma Linda University Health pinpointed two potential genetic markers that may help to explain why Hispanic and Latino children are at increased risk of worse outcomes for leukaemia.
“The real, molecular understanding of why some ethnic groups don’t do as well with various forms of cancer is not well understood,” said Dr Mark Reeves, co-author of the study, in 2021, explaining only that there are “genetic alterations.”
The recent Keck School of Medicine study built on these findings, using what is called genetic fine-mapping analysis to zero in on a gene variant found to make ALL risk 1.4 times more likely in Hispanic and Latino populations.
“It's really an important gene. We knew somewhat that there was probably a genetic contribution to the increased risk. We did not know the full extent of that."
“It’s really an important gene,” says lead author Dr Adam de Smith, assistant professor of population and public health science and a scholar at the Leukemia & Lymphoma Society. “We knew somewhat that there was probably a genetic contribution to the increased risk. We did not know the full extent of that, and I would say we still don’t [know the full extent], but obviously our finding contributes to that understanding. There’s still more to find out.”
Dr Rayne Rouce, an associate professor at Texas Children’s Hospital and Baylor College of Medicine and a member of the Leukemia & Lymphoma Society’s board of directors, says the state of the field today “is an exciting place to be” and this sort of research could pave the way for better interventions.
“We are starting to use more targeted treatments that are less toxic, and we are targeting leukaemia more directly than we ever have before,” she says.
Addressing social determinants of health
Rouce says what is now crucial is coupling this scientific advancement with addressing social determinants of health that impact paediatric cancer care in Hispanic and Latino communities.
She explains the total scope of treatment for paediatric ALL can last 2.5-3 years, with the first 6-8 months potentially involving highly intensive care like weekly chemotherapy. Families may also face unexpected hospitalisations and complications. The ordeal “can bring your family and livelihoods to a screeching halt”, Rouce says.
For children from low-income families, the effects can be especially pronounced. Single-parent families, working parents who cannot afford to take long stretches of time off work, and families living in a “medical desert” where the nearest clinic or paediatric leukaemia specialist is several cities away may experience compromised access to care.
“Just going to a simple check-up with a pediatric oncologist requires a week’s worth of planning for some people.”
“Not surprisingly, this disproportionately affects racial and ethnic minorities, but also people of lower socioeconomic status and people who live in rural areas,” Rouce says. “Just going to a simple check-up with a pediatric oncologist requires a week’s worth of planning for some people.”
She stresses that the complicated US health insurance system, and whether families have public, private, or no insurance, are also important considerations. Therapies are costly, especially for targeted treatments.
Hispanic and Latino families in the US are more likely to be uninsured and underinsured. Hispanic Americans are less likely to have health insurance than other ethnic groups, according to 2021 figures from KFF. The rate of Latino people who were uninsured went from 32.7% in 2010 to 18% in 2022, but, as a whole, this population is still more than twice as likely to be uninsured than white non-Latino peers.
Childhood cancer care with cultural sensitivity
As the founder and executive director of The Latino Cancer Institute, Ysabel Duron, a cancer survivor and former journalist, has long been thinking about these quandaries. By way of the advocacy organisation, which aims to improve the overall cancer landscape for Latino people throughout the US, Duron has had a front row seat advocating for the needs of the greater Hispanic and Latino populations under the brightest of spotlights. President Joe Biden appointed her to the National Cancer Advisory Board, making her the first patient advocate to serve in this role.
Asked if childhood cancer is discussed enough within Hispanic and Latino communities and in national and local public health outreach efforts, she says a clear “no”. A survivor of non-Hodgkin's lymphoma, Duron knows firsthand the challenges of cancer. She says health leaders and policymakers do not always possess the cultural awareness to communicate well with Hispanic and Latino communities.
Health leaders and policymakers do not always possess the cultural awareness to communicate well with Hispanic and Latino communities. Photo: Emma Bauso
For instance, outreach to a Cuban American family might be different than with a Mexican American family, or a family that recently immigrated from El Salvador, because dialects, traditions, and norms vary greatly.
“It’s important to give [families] the information, so they choose to participate in the healthcare of the family itself, so that they will take action,” Duron says of empowering people directly.
Sometimes a picture is worth a thousand words—literally. Alan Quinonez is a graphic designer originally from Mexico who lives in California. He met Duron while volunteering with various nonprofits. She suggested he use his talents to create a picture book for Hispanic and Latino children that communicates the realities of living with cancer in terms they can relate to.
It was shocking to see how most children's books about cancer feature illustrations depicting white children.
Quinonez says it was shocking to see how most children's books about cancer feature illustrations depicting white children. He created Benito, You Can Do It!, an 80-page picture book—40 pages in Spanish, 40 in English—that shows the journey of a Latino family facing a childhood cancer diagnosis and uses a soccer analogy to explain the roles of various healthcare workers.
Through a support group hosted by the nonprofit Latinas Contra Center in San Jose, California, Quinonez met families he was able to interview as part of his research for the book. “Creating a book showing brown-skinned characters” brings comfort to Hispanic and Latino families who see themselves represented in the images, Quinonez says. “This book is a story of how to bolster them up, give them hope.”
Involving Hispanic and Latino communities in cancer research
Duron says a big childhood leukaemia blind spot in the US is the lack of representation of Latino and Hispanic people in research and clinical trials. Indeed, a 2022 study by the American Society of Clinical Oncology reported that the Hispanic and Latino population comprises more than 60 million people in the 2020 US Census (almost 20% of the total population), but only 2.3% to 3.9% of therapeutic trial participants—and this proportion is decreasing over time.
Rouce says the Leukemia & Lymphoma Society is working to bridge these gaps. Like the African American population in the US, Latino and Hispanic patients “are much less likely to enroll in clinical research,” she says. Historical mistrust in medical institutions plays a role, she explains, but there is also a “lack of awareness and access” to research and trials.
“We have to make sure we are meeting people where they are and discussing these studies and the importance of representation in these clinical trials in a culturally appropriate way, in a linguistically appropriate way, and in places and spaces where [patients] feel comfortable and some of the ‘unknown’ of trials is demystified,” Rouce adds.
“We have to work together and never make assumptions about why someone may be willing or unwilling to participate in research.”
It is clear that addressing the disparities in ALL among Hispanic and Latino children requires a multifaceted approach that encompasses scientific and social dimensions. While research continues to uncover crucial insights into the increased risk of ALL faced by these populations, it is equally important to tackle the broader social determinants of health that contribute to unequal outcomes—and improve the outlook for Hispanic and Latino children facing this challenging diagnosis.
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