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

Published online by Cambridge University Press:  24 August 2023

Bistra Zheleva Open the ORCID record for Bistra Zheleva [Opens in a new window] ,
Amy Verstappen ,
David M. Overman ,
Farhan Ahmad ,
Sulafa K.M. Ali ,
Zohair Y. Al Halees ,
Joumana Ghandour Atallah ,
Isabella E. Badhwar ,
Carissa Baker-Smith  and
Maria Balestrini
...Show all authors
Bistra Zheleva*
Affiliation:
Children’s HeartLink, Minneapolis, MN, USA
Amy Verstappen
Affiliation:
Global Alliance for Rheumatic and Congenital Hearts, Kathmandu, Nepal
David M. Overman
Affiliation:
The Children’s Heart Clinic, Children’s Minnesota, Mayo Clinic-Children’s Minnesota Cardiovascular Collaborative, Minneapolis, MN, USA
Farhan Ahmad
Affiliation:
Pakistan Children’s Heart Foundation, Lahore, Pakistan
Sulafa K.M. Ali
Affiliation:
Sudan Heart Center & University of Khartoum, Khartoum, Sudan
Zohair Y. Al Halees
Affiliation:
King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia
Joumana Ghandour Atallah
Affiliation:
Brave Heart, Beirut, Lebanon
Isabella E. Badhwar
Affiliation:
Cardiac Kids Foundation of FL, Oldsmar, FL, USA
Carissa Baker-Smith
Affiliation:
Nemours Children’s Health, Wilmington, DE, USA
Maria Balestrini
Affiliation:
National Pediatric Hospital JP Garrahan, Buenos Aires, Argentina
Amy Basken
Affiliation:
Conquering CHD, Madison, WI, USA
Jonah S. Bassuk
Affiliation:
Strong Heroes, NY, USA
Lee Benson
Affiliation:
The Hospital for Sick Children, Toronto, ON, Canada
Horacio Capelli
Affiliation:
National Pediatric Hospital JP Garrahan, Buenos Aires, Argentina
Santo Carollo
Affiliation:
Cardiac Kids Foundation of FL, Oldsmar, FL, USA
Devyani Chowdhury
Affiliation:
Nemours Cardiac Center, Wilmington, DE, USA and Cardiology Care for Children, Lancaster, USA
M. Sertaç Çiçek
Affiliation:
Department of Cardiovascular Surgery, Istanbul University, Istanbul Faculty of Medicine, and Liv Hospital VadIstanbul–Istinye University, Istanbul, Turkey
Mitchell I. Cohen
Affiliation:
Inova Children’s Hospital, Fairfax, Falls Church, VA, USA
David S. Cooper
Affiliation:
Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA
John E. Deanfield
Affiliation:
Great Ormond Street Hospital (GOSH) for Children and University College London, London, UK
Joseph Dearani
Affiliation:
Mayo Clinic, Mayo Clinic-Children’s Minnesota Cardiovascular Collaborative, Minneapolis, MN, USA
Blanca del Valle
Affiliation:
Kardias AC, Mexico City, Mexico
Kathryn M. Dodds
Affiliation:
Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Junbao Du
Affiliation:
Peking University First Hospital, Beijing, China
Frank Edwin
Affiliation:
Ho School of Medicine, University of Health & Allied Sciences; Ho Teaching Hospital, Volta Region, Ghana
Ekanem Ekure
Affiliation:
College of Medicine, University of Lagos & Lagos University Teaching Hospital, Lagos, Nigeria
Nurun Nahar Fatema
Affiliation:
Bangladesh Specialized Hospital, Dhaka, Bangladesh
Anu Gomanju
Affiliation:
Global Alliance for Rheumatic and Congenital Hearts, Kathmandu Institute of Child Health, Kathmandu, Nepal
Babar Hasan
Affiliation:
Sindh Institute of Urology & Transplantation, Karachi, Pakistan
Lewis Henry
Affiliation:
Cardiac Kids Foundation of FL, Oldsmar, FL, USA
Christopher Hugo-Hamman
Affiliation:
University of Cape Town and Christiaan Barnard Memorial Hospital, Cape Town, South Africa
Krishna S. Iyer
Affiliation:
Fortis Escorts Heart Institute, New Delhi, India
Marcelo B. Jatene
Affiliation:
University of São Paulo and InCor Hospital, São Paulo, Brazil
Kathy J. Jenkins
Affiliation:
Harvard Medical School, Boston Children’s Hospital, Boston, MA, USA
Tara Karamlou
Affiliation:
Cleveland Clinic, Cleveland, OH, USA
Tom R. Karl
Affiliation:
Paediatric Cardiac Research, University of Queensland, St Lucia, Australia
James K. Kirklin
Affiliation:
Kirklin Solutions, Inc (KIRSO), Birmingham, AL, USA
Christián Kreutzer
Affiliation:
Division of Pediatric Cardiovascular Surgery, Hospital Universitario Austral, Buenos Aires, Argentina
Raman Krishna Kumar
Affiliation:
Amrita Institute of Medical Sciences and Research Centre, Amrita Vishwa Vidyapeetham, Kochi, KL, India
Keila N. Lopez
Affiliation:
Texas Children’s Hospital/Baylor College of Medicine, Houston, TX, USA
Alexis Palacios Macedo
Affiliation:
Instituto Nacional de Pediatría; Centro Pediátrico del Corazón CM-ABC; Kardias AC, Mexico City, Mexico
Bradley S. Marino
Affiliation:
Cleveland Clinic, Cleveland, OH, USA
Eva M. Marwali
Affiliation:
National Cardiovascular Center Harapan Kita, Jakarta, Indonesia
Folkert J. Meijboom
Affiliation:
University Medical Center Utrecht, Utrecht, The Netherlands
Sandra S. Mattos
Affiliation:
Real Hospital Português de Beneficência em Pernambuco, Círculo do Coração, Recife, Brazil
Hani Najm
Affiliation:
Cleveland Clinic, Cleveland, OH, USA
Dan Newlin
Affiliation:
NewlinLaw, Orlando, FL, USA
William M. Novick
Affiliation:
William Novick Cardiac Alliance, University of Tennessee Health Science Center Global Surgical Institute, Memphis, TN, USA
Sir Shakeel A. Qureshi
Affiliation:
Evelina London Children’s Hospital and Guy’s & St Thomas Hospital Trust, London, UK
Budi Rahmat
Affiliation:
National Cardiovascular Center Harapan Kita, Jakarta, Indonesia
Robert Raylman
Affiliation:
Gift of Life International, Fresh Meadows, NY, USA
Irfan Levent Saltik
Affiliation:
American Hospital, Nişantaşı, Istanbul, Turkey
Craig Sable
Affiliation:
Children’s National Hospital, Children’s National Health System, Washington, District of Columbia, USA
Nestor Sandoval
Affiliation:
Fundacion Cardioinfantil-Instituto de Cardiologia, Bogota, Colombia
Anita Saxena
Affiliation:
Pt. B.D. Sharma University of Health Sciences, Rohtak, India
Emma Scanlan
Affiliation:
Chain of Hope, London, UK
Gary F. Sholler
Affiliation:
Heart Centre for Children, Sydney Children’s Hospitals Network & University of Sydney, Westmead, Australia
Jodi Smith
Affiliation:
Mended Hearts, Metamora, IL, USA
James D. St Louis
Affiliation:
Inova Fairfax Hospital and Inova L.J. Murphy Children’s Hospital, Fairfax, and Children’s Hospital of Georgia and Augusta University, Augusta, GA, USA
Christo I. Tchervenkov
Affiliation:
The Montreal Children’s Hospital of the McGill University Health Centre, Montréal, QC, Canada
Koh Ghee Tiong
Affiliation:
Sultan Idris Shah Serdang Hospital, Sepang, Malaysia
Vladimiro Vida
Affiliation:
Pediatric and Congenital Cardiac Surgery Unit, University of Padova, Padova, Italy
Susan Vosloo
Affiliation:
Christiaan Barnard Memorial Hospital, Cape Town, South Africa
Douglas J. “DJ” Weinstein
Affiliation:
Cornell University, Ithaca, New York, USA
James L. Wilkinson
Affiliation:
Royal Children’s Hospital and University of Melbourne, Melbourne, Australia
Liesl Zuhlke
Affiliation:
University of Cape Town; South African Medical Research Council, Cape Town, South Africa
Jeffrey P. Jacobs
Affiliation:
Cardiac Kids Foundation of FL, Oldsmar, FL, USA Congenital Heart Center, Division of Cardiovascular Surgery, Departments of Surgery and Pediatrics, University of Florida, Gainesville, FL, USA
*
Corresponding author: B. Zheleva; Email: [email protected]
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Abstract

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 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.

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. A copy of this Washington DC WCPCCS Call to Action is provided in the Appendix 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 care systems, and improving access to high quality and equitable healthcare for children with heart disease as well as adults with congenital heart disease worldwide.

Keywords

Paediatric heart diseasecongenital heart disease: CHDadvocacy
Type
Original Article
Information
Cardiology in the Young , Volume 33 , Issue 8 , August 2023 , pp. 1277 - 1287
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This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Copyright
© The Author(s), 2023. Published by Cambridge University Press

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.

Acknowledgements

We thank all individuals and all organizations no matter how small or large who contribute to paediatric and congenital cardiac care across the globe, across all ages from foetal to adult life, and across the spectrum from poor to well-resourced facilities. We also thank the support systems of all such activities. Each such individual can contribute, and each contribution is important. The further organisation of the collective of all interested and involved individuals and organizations will only add value and growth by cooperating and supporting each other.

Author contribution

Bistra Zheleva, Amy Verstappen, and David M. Overman contributed equally to this paper and are therefore co-first authors.

Financial support

This research received no specific grant from any funding agency, commercial or not-for-profit sectors.

Competing interests

None.

Ethical standard

No human or animal experimentation was conducted during the course of this research. All procedures contributing to this work comply with the ethical standards of the relevant national guidelines on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.

APPENDIX 1:

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

“There can be no keener revelation of a society’s soul than the way in which it treats its children” Nelson Mandela 1995

We, the pediatric and adult congenital cardiac community from around the world, gathered here in Washington, D.C., United States of America from August 27 to September 1, 2023, to share and learn from each other during the 8th World Congress of Pediatric Cardiology and Cardiac Surgery. We issue an urgent call for action by all governments, all health and development agencies, and the world research and academic community to protect and promote the health of all people with pediatric and congenital heart diseases. To that end, we call to action:

WASHINGTON, D.C. CALL TO ACTION ON ADDRESSING THE GLOBAL BURDEN OF PEDIATRIC AND CONGENITAL HEART DISEASES

Background

Across the world children with heart disease suffer appalling and shameful neglect. The tremendous advances made in reducing childhood mortality from pediatric and congenital heart diseases are confined to high-income countries (HICs) leaving low- and middle- income countries (LMICs) far behind. Of every 100 children born around the world, one will have a malformation of the heart, congenital heart disease (CHD). Nearly half of the children with CHD will need a medical intervention in their lifetime, and a quarter of them will need it in the first year of life in order to survive.

Up to 90% of those born with CHD in LMICs do not have access to cardiac care, and they continue to suffer the high levels of death and disability HICs began to overcome more than fifty years ago. In HICs, medical advances increased childhood survival from an estimated 10% in 1950 to over 90% by 1990, and individuals with even the most complex heart defects are now reaching their fifth and sixth decade of life. In contrast, children born with CHD in LMICs face a vastly different prognosis. CHD is quickly becoming a leading cause of mortality in neonates and children in LMICs, and for those who survive, it can be a life-limiting condition if left untreated.

This problem is not limited to CHD. Rheumatic heart disease (RHD), a preventable non-communicable disease, is the most common acquired heart disease among children and young adults in Africa and affects 1.5 – 3% of school-aged children. More than 10% of affected individuals die within 12 months of diagnosis; RHD accounts for a substantial proportion of maternal mortality and significant economic burden. In 2010, the economic burden associated with RHD was estimated to be US$791 million – $2.37 billion.

Other heart conditions acquired in childhood (Those include conditions such as myocarditis, cardiomyopathy and Kawasaki disease.) also contribute significantly to the burden of pediatric and congenital heart disease and all have less favorable prognoses in LMICs. Whether or not these children survive and grow to reach their full human potential depends largely on birth location and access to heart care treatment throughout their lifetime. There is a dire need for more comprehensive treatment facilities and programs to prevent the deaths of these children, and to provide them with ongoing care as they enter adulthood.

Accelerating progress to address the burden of pediatric and congenital heart disease globally is in line with the 2030 Global Agenda for Sustainable Development (SDG3). We believe that the existing gross inequity in the health status of people with pediatric and congenital heart disease, particularly in LMICs, is politically, socially, and economically unacceptable, and is therefore of concern to all countries. Long-term investment into the lifelong well-being of children should be a guiding value for investments in health and a key priority.

We hereby call upon the global community in general, and every responsible government, for an effective policy response supported by adequate financial investment to address the needs of all with pediatric and congenital heart diseases. To this end, we recommend to governments, multilateral organizations (the World Health Organization, the United Nations Children’s Fund, the World Bank and others), funders, professional societies, research and teaching institutions, civil society, and the private sector, the following key actions:

Increase capacity to care for people with pediatric and congenital heart diseases

2030 Goal: The timely diagnosis, treatment and lifelong care of pediatric and congenital heart disease will be integrated into all health system strengthening and surgical scale-up plans.

  1. ① Domestic and global investments to increase capacity for pediatric and congenital cardiac care at secondary and tertiary hospitals.

  2. ② Harness private sector capacity and innovations in areas of digital, primary care and diagnostics, task shifting if available.

  3. ③ Support of local referral networks by ministries of health and regional academic institutions to improve early diagnosis, surveillance, and lifelong care of heart disease, and to develop diagnostic and treatment guidelines for low-resource settings.

  4. ④ Universities, NGOs (Non-Governmental Organizations) and teaching hospitals should invest in multi-year partnerships focusing on leadership, infrastructure development and training to increase the technical capacity and financial sustainability of local hospitals.

Build the pediatric and congenital cardiac workforce (These recommendations for training of pediatric cardiac care staff align with the vision and goals of the World Health Organization’s Call to Action: Addressing The 18 million Health Worker Shortfall, and the Global Strategy on Human Resources for Health: Workforce 2030.)

2030 Goal: Health professionals will be able to recognize the basic signs and symptoms of congenital and rheumatic heart disease. Accredited pediatric cardiac training programs will be available in all countries.

Ministries of health, finance, and education, and regional professional bodies collaboration to:

  1. ① Evaluate workforce needs in pediatric and congenital cardiac care.

  2. ② Develop accredited pediatric and congenital cardiac training and education centers and programs that include developing the technical and leadership capacity of specialist pediatric cardiac nurses, physicians, pharmacists, perfusionists, and respiratory therapists, and others.

  3. ③ Develop pediatric and congenital cardiac workforce strengthening plans with appropriate recruitment and incentivization to minimize attrition, promote career satisfaction and skills retention in the nursing and pediatric cardiac care professions.

  4. ④ Support the careers of existing pediatric and congenital cardiac care professionals and build mentorship programs and viable career path options for the next generation.

Close the data gap

2030 Goal: Data on pediatric and congenital heart diseases will be collected in national health surveys and included in burden of disease and cause of child death statistics.

  1. ① Update the burden of disease data on pediatric and congenital heart disease with a particular focus on LMICs. Congenital heart disease should be included in all national child health, surgical, burden of disease and cause of death surveys and reported to national health ministries and international organizations such as the World Health Organization and the World Bank.

  2. ② Research and advocacy on ending preventable child deaths must include pediatric and congenital heart disease as a significant contributor.

  3. ③ Publication by pediatric and congenital cardiac care providers in LMICs of outcomes research, cost analyses, and other topics relevant to low-resource settings, especially to inform health policy.

  4. ④ Prioritize the application of cost-effective technologies and quality improvement strategies that can reduce costs and improve outcomes for children with heart disease in low-resource settings.

Finance pediatric and congenital cardiac care

2030 Goal: Care for pediatric and congenital heart disease will be included in benefits packages in universal health coverage and social protection platforms, protecting patients from catastrophic expenses related to their care.

Ministries of health, finance, and education, and regional professional body collaboration to:

  1. ① Mobilize increased funding at domestic and international levels in order to achieve scaling of cardiac surgical and anesthesia care in LMICs.

  2. ② Provide support to individuals and families of children with heart disease who experience indirect expenses related to accessing and sustaining care, particularly those at risk of poverty.

  3. ③ Track and report financial data at hospitals in LMICs with functional pediatric cardiac care services using standardized metrics such that analyses can be made on the cost of scaling up care for children with heart disease.

  4. ④ Develop and strengthen cross cover and mutually beneficial funding relationships between public and private health providers.

  5. ⑤ Mobilize funding for LMIC-focused research and data collection.

APPENDIX 2:

Organisations that have signed 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

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 the 126 organisations from 38 countries and has also been signed and endorsed by 415 individuals from 60 countries.

Importantly, the Washington DC WCPCCS Call to Action has been signed and endorsed by The World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS) and the International Steering Committee of The World Congress of Pediatric Cardiology and Cardiac Surgery.

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Figure 0

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 1

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

Figure 2

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