Medicine is Not Colorblind

Racial Disparities in Congenital Heart Disease Outcomes

One Heart Health supports the Black Lives Matter movement and is committed to internal efforts to better understand, include, and support Black lives in our work. Below, One Heart Health Board Member Bistra Zheleva shares her thoughts on the significant racial disparities in congenital heart disease outcomes in the US, and that better medicine is not just a goal for historically low-resourced countries, but the US as well.

October 2020 – By Bistra Zheleva

Congenital heart defects (CHD) are the most common birth defect in infants, regardless of where one is born. Fortunately, if you are born in the US or another high-income country, your chances of perishing due to a heart defect has steadily reduced over time. For example, between 1990 and 2017, according to the Lancet’s global burden of disease study, CHD has declined  from second to fourth place as a cause of infant mortality in high-income countries. This reduction is due to the advancement of surgical and interventional therapies and to the increased focus on screening prenatally and in the first days of life. 

To many, this drop in infant CHD-related deaths in the US seems to confirm a common held belief that all American babies with CHDs have an improved chance at a healthy life. In fact, this belief is one of the reasons NGOs such as One Heart Health and Children’s HeartLink have focused their attention abroad, in low-resourced countries, where pediatric cardiac care is less likely and 9 out of 10 children go untreated for CHDs.

However, if we look closely at the data, we see that it is not entirely true that all American babies with CHD have an equal chance at a healthy life. Additional disaggregation of US data shows that US medicine is not colorblind. There are significant and persistent health disparities for US infants with CHDs related to race. A recent paper in Circulation by Lopez et al. described some disturbing trends. Despite an overall decrease in mortality related to CHD over the past 19 years, disparities in mortality from CHD persist: men have a higher mortality than women; non-Hispanic Blacks have a higher mortality compared with non-Hispanic Whites; and, while there has been decreasing mortality rates in non-Hispanic Whites over the past decade, Hispanic CHD-specific infant mortality rates have not changed. The largest disparity in mortality was in children under one years of age. The authors conducted an analysis of death certificates from 1999 to 2017 to calculate annual CHD mortality by age at death, race/ethnicity, and sex. Even controlling for other factors such as prematurity and insurance coverage, they found large disparities between White and Black infants with CHD. 

Another study published earlier in the summer by the Journal for Thoracic and Cardiovascular Surgery (JTCVS) had similar findings. Tjoeng et al. examined the association between race/ethnicity and mortality following pediatric cardiac surgery over a seven-year period. The authors reported that among children admitted immediately following cardiac surgery, Black race was associated with both increased severity of illness on admission and in-hospital mortality, and that the association between race and mortality weakened after adjusting for severity of illness. These findings suggested that pre- and intra-operative factors may drive this racial disparity. The authors speculate that the cause for this may be a marker of less or inadequate prenatal or prehospital care, or delays in referral or presentation.

A third publication studied the continuity of care among CHD patients. The study found that lapse in care appeared prevalent among CHD survivors by age five, with nonwhites demonstrating elevated risk. Specifically, the study found that 76% of all CHD patients studied experienced a lapse in care. Only 42% of those returned for care by age five, but non-Whites experienced lapses in care at younger ages than Whites and had a 53% increased risk of lapse in care. 

These studies are just a few in a line of publications with findings that substantiate that racial disparities in pediatric cardiac care do exist in the US despite the strong belief that medicine is colorblind. Unfortunately, until recently, these problems were seriously understudied and despite this current evidence, the causes of the disparities are still not completely clear, nor is research being done into other types of outcomes such as quality of life. 

Very likely, these differences are socioeconomic in nature rooted in historical racial inequalities and discrimination leading to poor access to care, delayed diagnosis, and lack of insurance coverage. For example, a study from 2018 found that, among Hispanic infants with two types of severe CHD, lower maternal education and public insurance status were linked to poorer outcomes. We should not be surprised by this finding, as it is now widely recognized that higher maternal education leads to better childhood health outcomes and lower childhood mortality, with some estimating that increases in maternal education could account for more than 50 percent of the global reduction in under-five mortality between 1970 and 2009.

The lack of equity of care in the US is part of a much larger global health crisis. As global health professionals we have to be aware and educated about what’s preventing children from accessing quality care no matter where they are born and live. For a long time the pediatric cardiac medical community assumed health disparities existed only in low- and middle-income countries, ignoring the reality in our own communities. What these data tell us is that even in high-income countries, incredible advances in congenital cardiac medicine cannot undo the harmful impact racial, economic, and educational disparities have on health. 

This is true in every country in the world, whether it is about basic access to primary care such as timely immunization or getting life-saving heart operations. Only when those barriers are clearly identified, can solutions be implemented. To quote a JTCVS editorial that accompanied the study mentioned above, the findings “demonstrate that excellence in congenital heart surgery requires expanding our world view beyond the confines of the operating room and ICU and renewing our emphasis on ensuring that children outside of our direct field of view are receiving equitable cardiac care before surgical intervention.”  

This leads me to my last thought that, we, as a community should not stop advocating until every child everywhere around the world, regardless of social status, can receive the highest quality cardiac care so she can grow and reach her full human potential. 

Bistra Zheleva is Vice President of Global Strategy and Advocacy at Children’s HeartLink, a global NGO focused on improving access to pediatric cardiac care through clinical capacity building and advocacy. Zheleva has 17 years of experience in program implementation and advocacy for improved access to care for children in low-resource settings and serves on the One Heart Health Board of Directors.

To learn more about One Heart Health’s efforts to use technology to overcome the gap in care for children needing heart screenings, check out our website and consider a donation to support our work.