Background

The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) will be held in Washington DC, USA, from Saturday, 26 August, 2023 to Friday, 1 September, 2023, inclusive. The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery will be the largest and most comprehensive scientific meeting dedicated to paediatric and congenital cardiac care ever held. At the time of the writing of this manuscript, The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery has the following demographics:

• 5,037 registered attendees (and rising) from 117 countries,

• a truly diverse and international faculty of over 925 individuals from 89 countries,

• over 2,000 individual abstracts and poster presenters from 101 countries, and

• a Best Abstract Competition featuring 153 oral abstracts from 34 countries.

For information about the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery, please visit the following website: [www.WCPCCS2023.org]. The purpose of this manuscript is to review the activities related to global health and advocacy that will occur at the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery, an extremely important quadrennial gathering of the global paediatric and congenital cardiac community. ^{Reference Hugo-Hamman and Jacobs1–Reference Karl, Martin, Jacobs and Wernovsky4}

The World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) Organizing Committee (Jeffrey P. Jacobs, MD, FACS, FACC, FCCP, Gil Wernovsky, MD, Mitchell I. Cohen, MD, David S. Cooper, MD, and Kathryn M. Dodds, RN, MSN, CRNP-AC) recognised that the World Congress is an incredible opportunity to collectively bring more attention to the global inequities in access to quality care for paediatric and congenital cardiac patients. Advocating for patients with paediatric heart disease and congenital heart disease can help increase awareness about these conditions, promote early detection and treatment, and improve the lives of those impacted by these diseases. Furthermore, professional advocacy is the responsibility of all who are dedicated to paediatric and congenital cardiac care; such advocacy will ensure that healthcare professionals have the necessary resources to deliver consistent excellent care for our patients and their families. ^{Reference Jacobs5,Reference Jacobs, St Louis, Speir and Painter6} Similarly, professional advocacy will ensure that we have the necessary resources to make life better for our patients and their families. ^{Reference Jacobs5,Reference Jacobs, St Louis, Speir and Painter6} The Organizing Committee of the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery has made advocacy for our patients a top priority of World Congress.

Paediatric heart disease and congenital heart disease do not discriminate. Sadly, survival is dependent to a large extent on where one is born, and the available medical and surgical resources for treatment in that area.

Congenital cardiac malformations are the most common types of birth defects. Congenital heart disease is present in approximately 10 out of every 1000 live births. ⁷ Before the introduction of current diagnostic modalities (including echocardiography), the estimated incidence of congenital heart disease ranged from 5 to 8 per 1000 live births. With improved diagnostic modalities, many more patients with milder forms of congenital heart disease can now be identified so that contemporary estimates of the incidence of congenital heart disease around the world range from 8 to 12 per 1000 live births. ^{Reference Hoffman and Kaplan8–Reference JIe10} However, the burden is much higher in countries with higher birth rates; and unfortunately, these countries also tend to have the lowest per capita income and highest levels of poverty, making congenital heart disease an overwhelming health, economic, and social challenge to address.

An estimated 1.35 million babies are born each year with congenital heart disease worldwide. ^{Reference Zimmerman, Smith and Sable11} As published in 2020 by The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD 2017 Congenital Heart Disease Collaborators: Meghan S Zimmerman, Alison Grace Carswell Smith, Craig A Sable, and colleagues) ^{Reference Zimmerman, Smith and Sable11} : “The relative importance of congenital heart disease as a cause of child mortality is rapidly increasing, as evidenced by the increase in the proportion of deaths due to congenital heart disease from 1990 to 2017, for all but the high socio-demographic index (SDI) quintile.” ^{Reference Zimmerman, Smith and Sable11} The fact that the proportion of deaths due to congenital heart disease is not declining in many low-income and middle-income countries is the fundamental reason for our call for action. Many of these children do not receive timely diagnosis or treatment, leading to significant and unnecessary morbidity and mortality. Every year, over 260,000 people die from congenital heart disease globally. In high-income countries, medical and surgical advances have increased childhood survival from 10% in 1950 to roughly 97% by 2017, and 70% of individuals with even the most complex heart defects are now living into adulthood. ^{12–Reference Jacobs, He and Mayer14} Today, 70% of the deaths associated with congenital heart disease globally occur in infants, and 85% of those deaths occur in low-income and middle-income countries. ^{Reference Zimmerman, Smith and Sable11} In most low-income and middle-income countries, up to 90% of those born with congenital heart disease do not have access to necessary cardiac care ^{Reference Tchervenkov, Jacobs and Bernier15} ; therefore, these low-income and middle-income countries continue to suffer the high levels of death and disability that high-income countries overcame more than 50 years ago. Congenital heart disease is a leading cause of mortality in neonates and children in low-income and middle-income countries, and for those who survive, it is often a life-limiting condition. Therefore, we urgently need to to assure more resources globally to neonates, infants, children, and the surviving adults with congenital heart disease.

This challenge is not limited to patients with congenital heart disease. In addition to congenital heart disease, other cardiac conditions are acquired in childhood and contribute significantly to the burden of paediatric heart disease and congenital heart disease (e.g., rheumatic heart disease, myocarditis, cardiomyopathy, Kawasaki disease, endocarditis, hypertension, and many other acquired cardiac and vascular diseases); all of these acquired cardiac conditions have less favourable prognoses in low-income and middle-income countries. Importantly, rheumatic heart disease, a preventable non-communicable disease, is the most common acquired heart disease among children and young adults in Africa, impacting 1.5–3% of school-aged children. More than 10% of impacted individuals die within 12 months of diagnosis. Rheumatic heart disease also accounts for a substantial proportion of maternal mortality and significant economic burden. It is a fact that rheumatic heart disease is endemic in many low-income and middle-income countries and is considered the most common cause of acquired heart disease in children and young adults, impacting over 38 million individuals worldwide. Rheumatic heart disease is largely preventable, and the global community needs to be involved in controlling this devastating disease in every country. ^{Reference Watkins, Johnson and Colquhoun16,Reference Tretter and Jacobs17}

These gross inequities in the health status and mortality of people with paediatric heart disease and congenital heart disease, particularly in low- and middle-income countries, are politically, socially, and economically unacceptable, and therefore of concern to all countries. Long-term investment into the lifelong well-being of neonates, infants, children, and adults should be a guiding value for investments in health, and a key priority for all. To achieve the newborn mortality targets of the 2030 Global Agenda for Sustainable Development (and Sustainable Development Goal 3), we must address mortality from congenital heart disease, which represents over 1/3 of the burden of birth defects worldwide. ¹⁸

The Washington DC WCPCCS Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases

Acknowledging the need for urgent change, we wanted to take the opportunity to bring a common voice to the global community and issue the Washington DC WCPCCS Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases (Figure 1 and Figure 2). A copy of this Washington DC WCPCCS Call to Action is provided in Appendix 1 of this manuscript. This Washington DC WCPCCS Call to Action is an initiative aimed at increasing awareness of the global burden, promoting the development of sustainable systems of care, and improving access to high quality and equitable healthcare for children with heart disease as well as adults with congenital heart disease worldwide. The document was developed by patients, families, clinicians, and clinical and health policy experts. This Washington DC WCPCCS Call to Action calls for several key actions to recognise and address the glaring inequities in recognition, access to, and investment in health services to address congenital and paediatric heart disease throughout the lifespan of our patients; this Washington DC WCPCCS Call to Action calls upon multiple organisations and entities to engage in and address these key actions, including:

• governments,

• multilateral organisations,

• funders,

• professional societies,

• research and teaching institutions,

• civil society, and

• the private sector.

Figure 1. The Washington DC WCPCCS Call to Action calls for several key actions: (1) increase capacity to care for people with pediatric and congenital heart diseases, (2) build the pediatric and congenital cardiac workforce, (3) finance pediatric and congenital cardiac care, and (4) close the data gap.

Figure 2. The QR code for the Washington DC WCPCCS Call to Action.

The Washington DC WCPCCS Call to Action is based on the recognition that congenital heart disease is a major global health issue, and the Washington DC WCPCCS Call to Action was built on the Invisible Child Call to Action from 2018. The Washington DC WCPCCS Call to Action requests changes and sets a 2030 goal in four areas, as they relate to the Sustainable Development Agenda:

1. 1. Increasing capacity to care for people with paediatric heart disease and adults with congenital heart disease.

2. 2. Building the paediatric and congenital cardiac workforce aligned with the vision and goals of the World Health Organization’s global strategy on human resources for health: workforce 2030. ¹⁹

3. 3. Closing the data gap necessary to assist decision-makers in the development of appropriate policies for paediatric heart disease and congenital heart disease.

4. 4. Financing paediatric and adult congenital cardiac care to assure families and patients are protected from catastrophic expenses related to their care.

We urge individuals and organisations to sign the Washington DC WCPCCS Call to Action either before or during The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery. With such broad support, we believe the Washington DC WCPCCS Call to Action will be a useful advocacy tool for anyone wishing to advocate with their government to bring attention and solutions to this pressing issue.

Global Health and Advocacy Village at the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery

Another important initiative during The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery will be Global Health and Advocacy Village. Global Health and Advocacy Village will be the first-of-its-kind gathering at WCPCCS. Organisations from around the world will gather and share their experiences, research, and knowledge in the field of paediatric cardiology and cardiac care; these organizations will include:

• patient and family-led organisations,

• medical mission organisations, and

• non-governmental capacity building and advocacy organisations.

Global Health and Advocacy Village will bring together 96 organisations from 37 countries (see Table 1). Global Health and Advocacy Village intends to promote collaboration, networking, and discussion among professionals in the field, but the most important goal of Global Health and Advocacy Village is to create a unified voice for those impacted by paediatric heart disease and congenital heart disease. Global Health and Advocacy Village will be an inclusive global gathering of the paediatric and congenital heart community, presenting an incredible opportunity to collectively support the Washington DC WCPCCS Call to Action. Both Global Health and Advocacy Village and the Washington DC WCPCCS Call to Action are top priorities for the Organizing Committee of The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery.

Table 1. Global Health and Advocacy Village at the Eighth World Congress of Pediatric Cardiology and Cardiac Surgery

Global Health and Advocacy Village will include exhibit tables as well as networking and educational activities for attendees. Global Health and Advocacy Village will offer an opportunity for participants to:

• learn about strategies for advocacy,

• learn about opportunities for advocacy, and

• connect with colleagues and experts from around the world.

Therefore, Global Health and Advocacy Village will help promote the exchange of knowledge and ideas among professionals working to improve health equity and the lives of both children with cardiac conditions and adults with congenital cardiac conditions.

The goal of Global Health and Advocacy Village is to bring together leaders of humanitarian organisations, patient and family groups, and clinical professionals to strengthen our common voice and accelerate action to improve global access to lifelong high-quality paediatric and congenital cardiac care. We hope that this group will continue to connect after the WCPCCS and build a global coalition to bring attention to these neglected issues.

Summary

Overall, the goal of the advocacy efforts during The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery is to promote equitable healthcare and associated policies and practices that improve the lives of neonates, infants, and children with cardiac disease and adults with congenital heart disease, as well as to help bring the paediatric and congenital cardiac community together under one cohesive agenda to address global inequities. Paediatric and congenital cardiac care is labor intensive and expensive; however, the investment of additional money and resources to provide paediatric and congenital cardiac care will save and improve countless lives.

We invite attendees of The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery, everyone in the paediatric and congenital cardiac community, and anyone who believes paediatric and congenital heart care should be available and accessible to all to join us in these efforts by signing the Washington DC WCPCCS Call to Action on the website https://www.wcpccs2023.org/ and by visiting the Global Health and Advocacy Village during World Congress.

On behalf of the Organizing Committee of The Eighth World Congress of Pediatric Cardiology and Cardiac Surgery, we would like to invite you to sign the Washington DC WCPCCS Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases highlighting the global inequities in paediatric and congenital heart care.

This Washington DC WCPCCS Call to Action, developed by patients, families, clinicians, and clinical and policy experts, calls upon governments, multilateral organisations, funders, professional societies, research and teaching institutions, civil society, and the private sector for several key actions to improve equitable recognition, access, and investment in health services to address childhood-onset heart disease.

Please sign either as an individual or organisation to endorse the Washington DC WCPCCS Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases. At the time of the writing of this manuscript, the Washington DC WCPCCS Call to Action on Addressing the Global Burden of Pediatric and Congenital Heart Diseases has been signed and endorsed by 126 organisations from 38 countries ( Appendix 2 ) and has also been signed and endorsed by 415 individuals from 60 countries.