Why Health Disparities Should Matter to You

Not every person living with CHD in the United States has equal access to appropriate care, equal treatment within the healthcare system, or even equal outcomes. Conquering CHD wants to change that and we need your help.

Congenital heart disease is the most common birth defect, but not every person living with CHD has the same access to, or treatment within, the U.S. healthcare system. Health disparities are a serious public health issue. At Conquering CHD, we are committed to educating the community about disparities faced by CHD patients and families.

As we delve further into the work on health disparities, we acknowledge the information is alarming and may be difficult to digest. The information we present may be new to many in the CHD community. Some may even have a hard time believing the statistics and evidence we share and may feel the information is inaccurate or caused by social determinants of health or other factors.

We understand these feelings and support the community as, together, we explore the weight of this information and what it means. We know it is essential to share the information, educate about health disparities, and do something to affect change – as well as to cultivate an environment where we can share our feelings, participate in meaningful dialogue, and support one another.

Through our health disparities social media campaign, as well as through other avenues, our goals are to:

  • Educate the community regarding the health disparities faced by members within the CHD community
  • Increase recognition of health disparities within the CHD community
  • Provide tangible next steps, thereby empowering the CHD community to act to correct health disparities and achieve health equity
  • Engage in thoughtful, positive conversations around health disparities
  • Engage interested scientific communities in this type of education

What are health disparities?

We invite you to check out our Health Disparities 101 blog which also includes a list of resources in case you’d like to learn more. 

Why do health disparities matter to me?

You might find yourself asking: why should these health disparities matter to me? The answer is both simple and complicated. Recognizing, acknowledging, and taking action against health disparities is an act of community, of solidarity, of ensuring all CHD patients and families have equitable, appropriate, specialized care throughout their lifetime.

Imagine for a moment you or your child are hospitalized due to CHD. While you are receiving high-quality care in room A, the patient in room B next door is battling for the right care because they are of a minority race or ethnicity, don’t speak English fluently, or have public insurance. For thousands upon thousands of patients and families, this is their everyday reality. 

In the United States, in 2021, there are children and adults with CHD who do not have equal access to appropriate care, who do not receive equal treatment within the healthcare system, and who do not have the chance to live the healthiest life possible. For some of these patients and families, it is a life or death situation.

What is Conquering CHD doing to combat health disparities and achieve health equity?

As the resounding voice of the CHD community, we have a responsibility to use our authority to affect change, at the federal, local, and even personal levels. We are deeply committed to using our voice to combat health disparities and ultimately reach health equity within the CHD community. We are committed to educating the community about disparities faced by CHD patients and families, and highlighting actions patients and families can take towards equitable health for all.

In order to create change and ignite advocates, we are:

  • Educating our supporters and the general public about the health disparities faced by some in the CHD community
  • Increasing accessibility of our resources through translation to other languages
  • Encouraging dialogue regarding health disparities through our Summit on Transparency and Public Reporting, Advocacy Conference, current health disparities campaign, and our daily work
    • 2020   Summit on Transparency & Public Reporting: Health Disparities Panel
    • 2021   Health Disparities Meeting: Conquering CHD Advocacy Conference
      • Diversifying volunteer networks, programming, and resources
      • Advisory Committee on Health Disparities – scientific and patient/family members
      •  Health Disparities Social Media Campaign (June – December) 
    • 2022   Health Disparities and Equity Track: Heart Connection Conference
  • Including patients and families representing all states, races, ethnicities, ages, and with all types of CHD as part of our organization
  • Working with a consultant to improve diversity, equity, inclusion, and belonging within the organization at both the national and state levels

We are sharing this information to ignite advocates across the country to work within their local communities, hospitals, and healthcare systems, to combat health disparities. As a community, with your help, we want to make meaningful progress towards eliminating health disparities and achieving health equity. Together, we are Conquering CHD.

If you’d like to explore some of the articles and studies we’ve cited throughout our health disparities social media campaign, we encourage you to consider these references:

References used in campaign statistics

Association of American Medical Colleges. (2019). Diversity in Medicine: Facts and Figures 2019. Retrieved from Association of American Medical Colleges: https://www.aamc.org/data-reports/workforce/report/diversity-medicine-facts-and-figures-2019

Brind’Amour, K. (2020, September 13). CMS Approves New Code for Adult Congenital Heart Disease Subspecialty. Retrieved from Pediatrics Nationwide: https://pediatricsnationwide.org/2020/09/13/cms-approves-new-code-for-adult-congenital-heart-disease-subspecialty/

Burns, J. a. (2021, June 8). An Introduction to American Indian/Alaska Native Health Disparities. Retrieved from Conquering CHD: https://www.conqueringchd.org/american-indian-alaska-native-disparities/

Centers for Disease Control and Prevention. (2020, December). Does health insurance impact the survival of babies with heart defects? Retrieved from Centers for Disease Control and Prevention – Congenital Heart Defects (CHDs): https://www.cdc.gov/ncbddd/heartdefects/features/keyfindings-health-insurance.html

Collins, J. S. (2016, November 8). African-American: White Disparity in Infant Mortality due to Congenital Heart Disease. The Journal of Pediatrics, 181, 131-136. doi:10.1016/j.jpeds.2016.10.023

Lopez, K. M. (2020, March 18). US Mortality Due To Congenital Heart Disease Across the Lifespan from 1999-2017 Exposes Persistent Racial/Ethnic Disparities. Circulation, 1132-1147. doi:10.1161/CIRCULATIONAHA.120.046822

Minority Nurse. (2015). Nursing Statistics. Retrieved from Minority Nurse: https://minoritynurse.com/nursing-statistics/

Salciccioli, K. S. (2021, February 15). Disparities in insurance coverage among hospitalized adult congenital heart disease patients before and after the Affordable Care Act. Birth Defects Research, 644-659. doi:10.1002/bdr2.1878

Smith-East, M. &. (2019, October 29). Mental Health Care Access Using Geographic Information Systems: An Integrative Review. Issues in Mental Health Nursing, 113-121. doi:10.1080/01612840.2019.1646363

Soskolne, G. C.-A. (2012, March). Racial disparities in congenital heart disease. Pediatric Critical Care Medicine, 13(2), 218-219. doi:10.1097/PCC.0b013e31822f112e

United States Census Bureau. (2020). United States. Retrieved from United States Census Bureau: https://data.census.gov/cedsci/profile?q=United%20States&g=0100000US

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