It's 2022; Why Do Demographic Disparities in Pediatric Cancer Still Exist in the United States?
National Minority Cancer Awareness
April is National Minority Cancer Awareness month, and the truth is we didn’t need the global pandemic to reveal what we already knew regarding the care of minorities with cancer. The overall availability of quality resources and treatments for diseases and illnesses is most definitely disproportioned when considering race and socio-economic status. Why do these disparities still exist in 2022? More importantly, why are children with cancer still not getting sufficient care regardless of household income or where they reside on the national map?
Pediatric cancer survival has undoubtedly improved in the United States for the past five decades to over 80%. However, differing outcomes among children and adolescents with cancer still affect many in the United States. Current studies have pinpointed characteristics associated with families receiving insufficient medical care for their child with cancer. The most vulnerable populations are patients of low socio-economic status living in medically underserved areas with no private insurance and Black or LatinX ethnicity. Medically Underserved Areas/Populations are designated by HRSA (Health Resource & Service Administration) as having too few primary care providers, high infant mortality, high poverty, or a high elderly population. It’s important to note that demographics, such as Native Americans/Alaskan Natives, outside these main observations residing in lower socio-economic areas also significantly struggle to find adequate cancer care. However, the percentages are lower based on population size.
Need for Racially Diverse Medicine in Childhood Cancer Care
Multiple studies have demonstrated that minority people of color in the U.S. have worse cancer and cancer care outcomes than white people. One such large study published in The Journal of the American Medical Association found that in a cohort of 67,061 US children and adolescents, children and adolescents with racial/ethnic minority status had worse cancer survival compared with non-Hispanic white children and adolescents. Among non-Hispanic black and Hispanic (all races) children and adolescents, the disparity was generally more significant for cancer types with higher vs. lower relative survival rates. The differences in treatment of minority adults of color with cancer have been blatantly apparent, and unfortunately, this same risk is extended to minority children of color.
A child relies on their guardian to make sure they are fed, kept clean, and, most importantly, healthy. However, usually, children have no knowledge or control over what their parents can provide them, especially with a cancer diagnosis. It almost feels like children are caught in the crossfires of the unconscious racial bias that directly impacts the quality of their cancer care. There’s no biological basis for that. Instead, it is more likely that the health care system and society have varying biases towards persons who share different social conditions than their own. Social conditions are the places where people live, learn, work, and play. The giant pink elephant in the room and one of the many reasons the medical system seems to be failing members of historically underrepresented groups in the U.S. is conscious and unconscious bias and discrimination. If you didn’t realize before, then hopefully, you had an awakening during the Covid-19 pandemic that revealed again how minorities of color were at significantly higher risk of infection and mortality due to the virus.
Conscious and Unconscious Bias
A lack of racial diversity within medical professionals has been directly correlated with a negative experience during general care and, notably, the extended cancer care journey. Black, Latinx, and Indigenous people are vastly underrepresented as providers of health care. In terms of actual patient care, patients are more likely to trust providers that look like them. The best way to solve this problem is to have more workforce diversity, equity, and inclusion because it’s critical for improving health care equity for minority families. As National Minorities Health Month aims to bring awareness to health gaps in minority communities, many are left wondering how to make a difference in such a deeply rooted issue. The good news is that there seems to be a slow but present shift post-pandemic regarding cancer care equity. An increasing number of organizations are starting to understand the benefits of a diverse group of providers with various racial and ethnic backgrounds. In addition, the implementation of workplace diversity and inclusion training at many institutions will hopefully help providers confront their own biases to provide better and equal care for ALL patients, especially children with cancer.
Staying Diligent For Your Child
As a parent and/or caregiver of a minority child with cancer, how can you stay informed and find equity in your cancer journey? It’s important to know who to contact and where to go as soon as your child is diagnosed with cancer, especially if you feel like you don’t have adequate resources available to you. Understandably, a pediatric cancer diagnosis adds an immediate sense of stress and fear for you and your child. If you live in a commonly underserved area, you may not even realize that the care afforded to you is limited. But, as a parent, if something feels lacking, go with your gut because additional resources are out there to help you. An increasing number of organizations offer help to minorities affected by cancer, and culturally sensitive family intervention programs have been found to help families cope with cancer significantly. Please check out some wonderful organizations with current programs to support minority cancer families.
- Somos Latinas Contra Cancer-A is a leading service and advocacy organization for Latinos around cancer issues. Provides cancer health education, patient navigation, and psychosocial family support group services focused on underserved, low-income, and Spanish-speaking women and girls.
- Black Women’s Health Imperative identifies the most pressing health issues that affect the nation’s 21 million Black women and girls and invests in strategies, partners, and organizations that ensure Black women live longer, healthier, and prosperous lives.
- Roswell Park Comprehensive Cancer Center-Has an entire program that specifically supports Indigenous people. Their goal is to reduce the impact of cancer on Indigenous communities regionally, nationally, and internationally.
- American Indian Cancer Foundation-Working to eliminate the cancer burdens of Indigenous people through improved access to prevention, early detection, treatment, and survivor support.
- Cure Childhood Cancer–Dedicated to conquering childhood cancer through funding targeted research while supporting patients and their families.
If you or a friend or loved one has had a child recently diagnosed with cancer, please reach out to Here to Serve for help. Here to Serve provides practical wrap-around support to families who have a child or parent of a child(ren) diagnosed with cancer. Just click on the Get Help button. Here to Serve is here to help!
By Sameera Rangwala