Cameron Takmil

Healthcare’s Youngest Victims: Inequality in Pediatric Healthcare and How We Can Fix It

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 by Cameron Takmil, February 24, 2024

Millions of children visit the emergency room every year with cuts, bruises, and a myriad of other diagnoses. Many are turned away from necessary treatments for seemingly nothing except one thing – race. While seemingly trivial, disparities across racial and ethnic lines persist, underscoring a critical need for systemic reform. Recent research spearheaded by experts at Northwestern revealed that healthcare inequities are widespread, affecting non-white minorities profoundly in pediatric care. 

The most concerning disparity was in pain management. When comparing kids of color to their white counterparts, they were not given proper medication at the same rate (Godoy 2024). 

These disparities manifest in other ways, including but not limited to diagnostic imaging, surgical complications, emergency care wait times, and treatment for developmental disabilities. Children of color often get the short end of the stick in these circumstances, receiving less than optimal care. UCLA researchers determined that white pediatric patients were more likely to receive sepsis treatment, compared to their black counterparts who also were less likely to be given full diagnostic testing through automated sepsis-alert systems (Li et. al 2022).

Premature infants of color tend to have increased rates of morbidities with regard to bronchopulmonary dysplasia, intraventricular hemorrhage, and necrotizing enterocolitis (Fanta et. al 2021). Those same infants generally had a lower birth weight, were born more prematurely, and had a higher mortality rate compared to white infants.

Differences lie not only in physical health, as mental health has seen its fair share of disparities amongst pediatric patients. Post-diagnosis, Latino and Black children receive medication and treatment at a lesser rate than White children (Fanta et. al 2021). Underdiagnosed and undertreated, patients of color were less likely to be evaluated on evidence-based mental health care and be given the correct medication all in all.

These inequalities persist despite the families having insurance, pointing towards the idea that these disparities are caused by other factors (Godoy 2024). Nevertheless, Hispanic and Black populations were much less likely to be uninsured, which is another hindrance in access to ubiquitous healthcare (Zhang et. al 2019).

The source of these inequalities stems from decades-long structural racism. Race-based residential segregation, institutional racism, and concentrated poverty have led and in many cases today, continues to worsen quality of housing, safety, and healthcare access and quality. A Harvard study found that in nearly all of the largest urban areas in the United States, two-thirds of non-Hispanic Black children and more than half of Hispanic children lived in areas graded as low- or very low opportunity (Slopen, Heard-Garris 2021). On the other hand, fewer than 1 in 5 Asian or White children live in low- or very low opportunity neighborhoods, clearly more affluent than their minority counterparts.

Government programs that have kept many afloat are slowly falling to the wayside, exposing vulnerable populations to even worse conditions. The Special Supplemental Nutrition Program for Women, Infants and Children, or WIC, served nearly half of the U.S’s infant population, and over six million children overall (Center for Health Journalism 2024). WIC has been able to improve birth metrics such as birth weight, preterm birth, and infant mortality rates. Despite being seemingly essential, the refusal by Congress to adjust its budget has put close to a million Americans at risk of losing their benefits.

These disadvantages extend into overall health as “toxic stress” – a term used by researchers at the Dana-Farber Cancer Institute – leads to negative consequences in physical and psychological health. Their study discovered that adversity during childhood was associated with poorer neurocognitive, neonatal, and cardiovascular health (Umaretiya et. al 2022). Due to red-lining – residential segregation policy in the 20th century – environmental risk is increased in more impoverished areas, posing a risk of safety and exposure to its residents (Samuelson 2024). Pediatric patients of color who live in these areas with higher density of housing code violations are more likely to be admitted and return to the ED due to asthma and related complications  (Fanta et. al 2021). 

If that was not enough to overcome, this prejudice has been baked into society with false, harmful, and misleading stereotypes, which many internalize, whether consciously or subconsciously. Minority parents, especially Hispanic parents, frequently report that healthcare providers do not dedicate sufficient time to understand their child’s needs, respect their parenting expertise, or align with their child-rearing preferences (Flores 2005). These same populations also reported that topics such as community violence, household smoking, alcohol usage, issues paying for the child’s basic needs, and spouse/partner support were discussed more frequently than white parents.

These sentiments extend far beyond healthcare, as anti-minority beliefs have come to the forefront in the past years. According to a recent national survey, “51% of whites think that blacks are prone to violence, whereas only 16% of whites think that whites are prone to violence” (Flores 2005). In the doctor’s office, we see much of the same, as the prevalence in which community violence was discussed quadrupled and tripled for Hispanic and Black patients respectively. Similar trends were found with regard to substance use, even in families where average income exceeded $75,000 (Flores 2005). 

This gap in communication and understanding only exacerbates the feeling of marginalization and can lead to decreased satisfaction with care and impaired patient-provider communication. These same minority populations have been reported to have higher levels of distrust of their provider, mainly due to implicit and explicit discrimination (Umaretiya et. al 2022). Such interactions might not only perpetuate discrimination but also detract from providers’ ability to educate, inform, and aid these patients.

It is not all hopeless, though, as there is a pathway for solutions to reduce the gap between patients of color and white patients. Addressing and solving disparities in pediatric healthcare is a multifaceted challenge that demands an in-depth and multidisciplinary approach. The strategies to promote health equity in pediatrics can be categorized into three levels: individual, institutional, and structural as demonstrated in research (Fanta et. al 2021). 

At the individual level, healthcare professionals can make up ground by engaging in continuous professional development focused on understanding and mitigating the impact of interpersonal racism, discrimination, and bias on pediatric health inequities (Fanta et. al 2021). It is crucial to educate providers on not only their explicit biases, but more importantly their implicit biases that they might not be aware of. Through this, a mindset of cultural humility and openness, being other-oriented, and recognizing the impact of power dynamics on building trusting relationships with patients and their families can be cultivated. 

These shortcomings of healthcare are not only the responsibility of the providers to ameliorate, as the onus is on institutions to invoke change themselves. Diversifying the workforce can enhance the relatability and effectiveness of the patient-provider relationship (Fanta et. al 2021). This could help patients feel more comfortable with providers who might be more apt to understand their plight. 

In a broader sense, addressing structural disparities requires moving outside of the healthcare system and advocating for policy reform aimed at eliminating inequities in critical social determinants of health. These determinants include healthcare access and quality, economic stability, education, neighborhood and built environment, and social and community context (Fanta et. al 2021). A study from Dana-Farber notes that adopting universal and systematic social determinants of health – coined as SDOH in their paper – screening within pediatric care can identify key areas where interventions can be most effective (Umaretiya et. al 2022). Identifying the specific root causes on a patient-to-patient basis will allow for much more optimized solutions.

Something as simple as integrating SDOH screens into each visit, within national pediatric protocols, can help identify mechanisms driving disparities and opportunities for intervention (Jindal et. al 2024). Developing multilevel health equity interventions that address identified pathways, such as access to care, patient-health-care-system interaction, and the impact of toxic stress, is crucial (Umaretiya et. al 2022).

It will be imperative to focus on improving the various systems that lead to poorer healthcare outcomes for pediatric patients of color. Efforts to dismantle the underlying racism that perpetuates pediatric racial and ethnic health inequities must focus on policies within multiple interdependent systems. This includes challenging housing policies that sustain poor housing, limiting access to resources like high-quality education and healthcare, and increasing exposure to environmental risk factors (Jindal et. al 2024). Enhancing family resilience through evidence-based psychosocial interventions can also play a role in mitigating the effects of toxic stress (Umaretiya et. al 2022).

To effectively reduce and solve disparities in pediatric healthcare, a concerted effort from all stakeholders—healthcare providers, institutions, policymakers, and communities—is required. This involves addressing not only the immediate healthcare needs of children but also the broader structural and social determinants of health that contribute to disparities. By implementing these strategies at the individual, institutional, and structural levels, we can move closer to achieving health equity in pediatrics, ensuring that all children have the opportunity to thrive and reach their full health potential.

Bibliography

  1. Godoy, M. (2024, January 18). Kids of color get worse health care across the board in the U.S., research finds. NPR. https://www.Godoy.org/sections/health-shots/2024/01/18/1225270442/health-inequities-pediatrics-kids-of-color-disparities
  2. Li, E., Ng, A. P., Williamson, C. G., Tran, Z., Federman, M. D., & Benharash, P. (2022). Assessment of Racial and Ethnic Disparities in Outcomes of Pediatric Hospitalizations for sepsis Across the United States. JAMA Pediatrics. https://doi.org/10.1001/jamapediatrics.2022.4396 
  3. Fanta, M., Ladzekpo, D., & Unaka, N. (2021). Racism and pediatric health outcomes. Current Problems in Pediatric and Adolescent Health Care, 51(10), 101087. https://doi.org/10.1016/j.cppeds.2021.101087 
  4. Zhang, X., Carabello, M., Hill, T., He, K., Friese, C. R., & Mahajan, P. (2019). Racial and Ethnic Disparities in Emergency Department Care and Health Outcomes Among Children in the United States. Frontiers in Pediatrics, 7. https://doi.org/10.3389/fped.2019.00525 
  5. Slopen, N., & Heard-Garris, N. (2021). Structural Racism and Pediatric Health—A Call for Research to Confront the Origins of Racial Disparities in Health. JAMA Pediatrics. https://doi.org/10.1001/jamapediatrics.2021.3594 
  6. The Health Divide: Pediatric care is worse for kids of color; federal nutrition program faces worrying shortfall | USC Center for Health Journalism. (n.d.). Centerforhealthjournalism.org. Retrieved February 10, 2024, from https://centerforhealthjournalism.org/our-work/insights/health-divide-pediatric-care-worse-kids-color-federal-nutrition-program-faces 
  7. Puja J. Umaretiya, Robert J. Vinci, Kira Bona; A Structural Racism Framework to Guide Health Equity Interventions in Pediatric Oncology. Pediatrics May 2022; 149 (5): e2021054634. 10.1542/peds.2021-054634, https://publications.aap.org/pediatrics/article/149/5/e2021054634/186711/A-Structural-Racism-Framework-to-Guide-Health
  8. Pediatric care for non-white children is universally worse across U.S. (n.d.). News.northwestern.edu. Retrieved February 10, 2024, from https://news.northwestern.edu/stories/2024/01/pediatric-care-for-non-white-children-is-universally-worse-across-u-s/ 
  9. Glenn Flores, Lynn Olson, Sandra C. Tomany-Korman; Racial and Ethnic Disparities in Early Childhood Health and Health Care. Pediatrics February 2005; 115 (2): e183–e193. 10.1542/peds.2004-1474 https://publications.aap.org/pediatrics/article/115/2/e183/67379/Racial-and-Ethnic-Disparities-in-Early-Childhood 
  10. Jindal, M., Barnert, E., Chomilo, N., Gilpin Clark, S., Cohen, A., Crookes, D. M., Kershaw, K. N., Kozhimannil, K. B., Mistry, K. B., Shlafer, R. J., Slopen, N., Suglia, S. F., Nguemeni Tiako, M. J., & Heard-Garris, N. (2024). Policy solutions to eliminate racial and ethnic child health disparities in the USA. The Lancet. Child & Adolescent Health, 8(2), 159–174. https://doi.org/10.1016/S2352-4642(23)00262-6 

Struggles of Organ Donation: Microcosm of American Healthcare

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by Cameron Takmil, December 2, 2023

In the last year alone, over 42,000 transplants were performed. Yet, 17 people a day of the 100,000 people on the national transplant waiting list die without the transplant they so desperately hope for (HRSA). Those who are fortunate to survive on life-sustaining treatments will likely find themselves without a transplant due to the shortcomings of the process as a whole.

Inequalities in organ transplantation can be sourced back to the frequency in which certain populations require new transplants altogether. African Americans and Hispanics disproportionately suffer kidney failure as well as organ failure as a whole — both over one and half times more likely compared to whites. This disproportionate rate of organ failure can be attributed to increased rates of general comorbidities that stem from poor healthcare access and health education (Harvard Health). 

Dr. Jessica Kendrick, a kidney specialist and researcher at University of California, outlined the two main factors that affect African Americans (UC Health)). “The two most common factors are diabetes and hypertension,” both of which also affect African Americans disproportionately, Kendrick said. She cited socioeconomic barriers as the underlying cause for these disparities in not only African Americans but disadvantaged minority populations as a whole. Organ failure is a culmination of poor health and is much more treatable if one is well-educated on their health and has consistent primary care access — something that many cannot say they have.

Geography plays a role as well, as those who are situated in more impoverished areas will have to battle food insecurity and poor quality of diet (NPR). In turn, they are more likely to develop fatty liver and have a need for a liver transplant. But, in rural and low-affluence areas, completing the rigorous testing necessary to land on a donor list becomes a tall order. The first steps in the transplant process is often one that many fail to even reach or surpass. The extensive work-up and evaluations necessary to get on the waiting list bogs down the many who are already struggling to get their routine check-ups. In 2023, over 1,500 Americans were omitted from the transplant list due to being too sick to receive a transplant, adding on the already 50,000 that die from liver disease every year (NPR).

Costs are not limited only to the surgery itself, as post-operative care and medication can be a toll on the already struggling. Dr. Mary Simmerling, an assistant professor at Cornell University with a PhD in bioethics, highlights this in one of her pieces regarding the implications of organ transplantation. “Even if there were a sufficient supply of suitable organs for transplantation, the reality is that the uninsured, underinsured and the poor do not currently have an equal opportunity to fully realize the benefits of organ transplantation because they do not have equal access to very expensive and necessary post-transplant immunosuppressant medications,” Simmerling states. 

Even those with Medicare are not safe from these expenses as coverage for these post-transplant medications and services only lasts three years – at 80 percent (Centers for Medicare Services). With the cost of nearly 2,000 dollars a month and close to 400 dollars after Medicare, those living off minimum wage salary can expect this to eat a sizable portion of their monthly income and even eclipsing their income if they are unable to obtain coverage (Simmerling 2007).

Recently, in 2022, Medicare introduced a “Part B Immunosuppressive Drug Benefit”, which is an extension of the partial coverage that allows for one to be covered continuously. While a step in the right direction, the caveat is that this only covers the exact medication for immunosuppressants but not additional medication that help treat possible complications arising from the immunosuppressant drug regimen or from surgery (i.e. organ rejection). This is simply not enough to ensure patients won’t be run up with charges if any complications come about post-surgery. 

Sentiments around donating organs have not helped either, as many are hesitant to donate due to a myriad of reasons. A study done by a group of Case Western researchers found that African-Americans’ tendency to donate was related to their lack of trust in the healthcare system. 38.6% of the African-American participants agreed with the statement that “if doctors know I am an organ donor, they won’t try to save my life”, a sentiment that is rooted in historically poor healthcare access and education (Siminoff 2006).

Lack of access can also be attributed to poor procurement by organizations responsible for retrieving and regulating donor organs. Organ procurement organizations, OPOs, facilitate the organ donation and procurement process, making organs available for transplant. Across the board, black families that were potentially interested in donating received less information than their white counterparts, a factor that makes minority families reluctant to donate (Forbes).

Today, there are 56 OPOs, all responsible for handling their respective donor service area (Scienceline). Only until recently have OPOs been responsible for being more transparent about their efficacy and process of procurement. Some estimate that almost 30,000 organs are not correctly retrieved due to inefficiencies and shortcomings of the current systems. These same estimates project that 25,000 additional lives could be saved. Dorry Segev, a professor of surgery at Johns Hopkins, brought up the point that “some OPOs are prioritizing their organs-procured-per-donor rate, ignoring potential donors where only one organ can be procured”. This limits the amount of organs procured, limiting the access down the line for all (Scienceline).

In the words of Elizabeth Warren, “Right now, [United Network for Organ Sharing] is 15 times more likely to lose or damage an organ in transit as an airline is to lose or damage your luggage,” said the Massachusetts’ senator. “That is a pretty terrible record,” (NPR).

Under the Biden administration, promises have been made to double the budget for OPOs and organ procurement programs as a whole, but it will take time to see if that will come to fruition (USA Today).

Plenty of solutions have been proposed, ranging from organs generated stem cells to compensating donors for their donation. Unfortunately, stem cells research is decades away from providing safe and effective generated organs that can replicate the function of human organs. Small scale studies have been successful in creating “miniature” organs, but are still far from creating human-scaled organs (Mayo Clinic).

Some have brought up the potential of allowing the sale of organs, which in theory would increase the available organs for transplantation. A study done at Stanford in 2018 explored the possible implications of allowing the sale of organs, specifically kidneys. The researchers estimated that a donated kidney would equate to $75,000 and the overall value being $1.3 million when considering the extension of lifespan. According to the study, “The study’s calculations showed a positive net benefit, in monetary terms, of $12.4 billion for low-income people overall. The researchers also calculated that the number of transplants per year would increase from 17,500 to 31,000 — enough to supply kidneys for yearly additions to the waitlist.” The proportion of transplant receipts who were considered non-affluent would go from a mere six percent to 30, a fivefold increase (Scope). Nevertheless, while promising, this experiment would be difficult to translate into the real world, due to the reluctance of legislators.

The dilemmas of organ transplantation reflect the greater issues of society today, as a multitude of problems today have coalesced to create the obstacles we face today. In a country that boasts the largest GDP in the world, there should be no reason anyone has to die waiting for their new chance at life.

Bibliography

  1. organdonor.gov, H. R. S. A. (2023). Organ Donation Statistics. Figures of Organ Donation. https://www.organdonor.gov/learn/organ-donation-statistics
  2. J. Kevin Tucker, M. (2021, February 3). What’s behind racial disparities in kidney disease? Harvard Health. https://www.health.harvard.edu/blog/whats-behind-racial-disparities-in-kidney-disease-2021020321842  
  3. Smith, T. (2023a, June 23). Why is chronic kidney disease risk higher for black people?. UCHealth Today. https://www.uchealth.org/today/why-chronic-kidney-disease-risk-higher-for-black-people 
  4. NPR.org. (2023, May 24). One man left Kansas for a lifesaving liver transplant, but the problems run deeper. https://www.npr.org/2023/05/24/1177589739/one-man-left-kansas-for-a-lifesaving-liver-transplant-but-the-problems-run-deeper 
  5. Centers for Medicare & Medicaid Services. (n.d.). Part B – Provider. https://www.cms.gov/partbid-provider 
  6. Journal of Ethics | American Medical Association. (2007, June). Beyond scarcity: Poverty as a contraindication for organ transplantation. https://journalofethics.ama-assn.org/article/beyond-scarcity-poverty-contraindication-organ-transplantation/2007-06 
  7. National Center for Biotechnology Information. (2007). The ethics of organ transplantation: How comprehensive the ethical framework needs to be. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1831604/ 
  8. Awan, O. (2023, February 22). Disparities of organ donations in America and how to rectify them. Forbes. https://www.forbes.com/sites/omerawan/2023/02/22/disparities-of-organ-donations-in-america-and-how-to-rectify-them/?sh=49f5d8904692 
  9. Scienceline. (2020, January). Organ donation in the US is broken, and we know who is to blame. https://scienceline.org/2020/01/organ-donation-in-the-us-is-broken-and-we-know-who-is-to-blame/ 
  10. NPR.org. (2022, August 17). Damaged and diseased organs: The agency overseeing transplants faces intense scrutiny. https://www.npr.org/sections/health-shots/2022/08/17/1118009567/damaged-and-diseased-organs-the-agency-overseeing-transplants-faces-intense-scru 
  11. USA Today. (2023, March 26). Organ transplant system overhaul: UNOS. https://www.usatoday.com/story/news/health/2023/03/26/organ-transplant-system-overhaul-unos/11522346002/ 
  12. Mayo Clinic Proceedings. (2011). The Ethics of Organ Donation by Living Donors. https://www.mayoclinicproceedings.org/article/S0025-6196(11)61602-9/fulltext 
  13. Scope Blog | Stanford Medicine. (2018, November 28). Compensation for kidneys would help the poor, study finds.  https://scopeblog.stanford.edu/2018/11/28/compensation-for-kidneys-would-help-the-poor-study-finds/