3. Congenital Heart Disease
In the last century the diagnostic and treatment capabilities of congenital heart disease have greatly improved. Several studies show an evident improvement survival in the more developed regions of the world, thanks to early diagnostics and treatment techniques development. However, such studies have not had the same success rates in developing regions. For example, advances in paediatric cardiology and heart surgery have made it possible to repair or palliate most o congenital heart disease, including complex ones, but many analyses have shown that "infant survival rates” depend on the geographic location of the child's birth.
Where screening, early diagnosis and treatment is available, the child has a 95% chance of surviving to adult life and achieving good long-term outcomes. These advanced treatments are virtually unavailable for more than 90% of babies born in developing countries [
1]. In 2016, the General Congress of the United Nations, across the Sustainable Development Goals (SDGs) declaration [
2], sets the neonatal mortality-freeing goal to less than 12 deaths for every 1000 live births. This objective will be achieved by reducing premature mortality from no – communicable diseases (NCDs) by 30% through 2030. Congenital heart disease accounts for one third of all NCDs and is therefore an integral part of reducing preventable childhood deaths. 90% of the world's children born with congenital heart disease live in places where there is little or no cardiac surgery treatment. [
3]. This inequality is emphasised by Hoffman and colleagues by showing that LMIC infants with severe congenital heart disease and without access to surgical treatment are more likely to die before their fifth birthday than those in HIC [
4]. To optimize resources for screening, treatment, and cost-effective treatment strategies, there is a need for an accurate assessment of the absolute and relative burden of congenital heart disease around the world. The
Global Burden of Disease, Injuries, and Risk Factor Study (
GBD) is the result of a collaboration of international researchers who annually estimate the prevalence and mortality of congenital heart disease all over the world. This report shows that CHD deaths and mortality are highest in LMIC, while rates of improvement have followed rates of economic development, with fatal outcomes decreasing by at least 60% since 1990 in high-income countries [
5]. More in-depth data and studies are needed to update the burden of disease across continents and are essential to monitor progress and encourage funding for sustainable solutions to deliver high-quality care to all children in need. The estimates made in recent years on CHD provide a critical and indispensable point of view with respect to the health of the global population, contributing to a better investment of health resources in order to increase access to cardiovascular care especially in less developed countries, where progress and resources in care, diagnostics and rehabilitation have been largely stagnant.
The United Nations Organization has emphasized the priority of reducing NCD premature deaths; however, to achieve this goal, health policies will have to develop specific responsibilities aimed at breaking down accessibility barriers by improving access to cardiac diagnosis and treatment. As noted above, most children with heart disease (CHD or RHD) living in developing countries with quality care lack access. It is well established that treatment of CHD and RHD is cost effective, justifying the concept of paediatric cardiac care. However, a number of barrier-filled challenges must be overcome before the average child living in a developing country can access comprehensive heart care. Early diagnosis requires community and health care provider awareness of paediatric heart disease, but it is only the beginning. The management of paediatric patients with CHD or RHD requires significant expenditure and infrastructure; but currently resources are not only limited, but also sometimes used sub-optimally. The challenges of providing the best care for the average child with heart disease are unparalleled, and will lead to innovations and opportunities; but this will require a collective effort by governments, non-governmental organizations, physicians and other health professionals for continuous improvement in health care delivery.
One of our experiences is involved is the city of Benghazi (Libya). This region, inserted in a post-war socio-economic context, refers all patients with congenital heart disease to a single private hospital, not guaranteeing equal and widespread accessibility. For this reason, a long-term project has been developed, with various regional and international healthcare stakeholders, which promotes cardiac surgery accessibility for the cardiac congenital patients [
13]. The project ambitions aim to achieve regional surgical autonomy, privileging the local staff training, the centres interconnection and the targeting of the right healthcare investments. This intercontinental network project follows the principles global cardiac surgery keys, extending international health rights by reducing social and economic disparities care.
3.1. Inequality
The walls to establishing cardiac surgery programs in LIC are numerous and complex, often with the sustainability of investment efforts as the primary challenge.
Recent epidemiological studies have identified no-communicable diseases, in particular cardiovascular disease (CVD), as the first cause of worldwide death.
The greatest burden (up to 80%) of death and disability from cardiac surgery occurs in low- and middle-income countries (LMICs) characterized by a gross national income per capita of less than $10 per year (data from 2004). These alarming trends have led to several attempts to develop strategies to address this great global challenge. Such strategies, by definition, require an integrated approach that includes preventive and high-tech medicine program that feed into and benefit from each other.
The importance of high-tech medicine, including cardiac surgery, has been highlighted in previous “Institute Medicine reports” as one of the recommendations for promoting cardiovascular health in the developing countries. However, the goals and recommendations outlined in these reports remain largely unfulfilled. Over the past 50 years, following the pioneering work, cardiac surgery has matured into an extremely sophisticated specialty dedicated to serving patients and science with an increasing role in improving patient care and in influencing survival and the globally quality of life. Cardiac surgery is an intensive and cost labour discipline, requiring great commitment and planning strategic of structured and funded training. Given the severely limited government budgets for healthcare in the LMIC countries, this objective was initially achieved with the creation of non-governmental organizations (NGOs) including a wide range of specialists. This can be significantly supported through the existing international networks of cardiology, cardiac surgeon and, above all, cardiac anaesthesia and professional societies. In these cases it was essential to involve the community in both the receiving and donor countries at all stages.
The introduction of disease-specific research programs and population studies significantly increases the strength and impact of such efforts and, importantly, contributes to the development of local practice guidelines, tailored to address problems and uniqueness environmental.
The ultimate target is the building of cardiac centres capable of offering high-quality sustainable services, free or at affordable prices, to all the inhabitants of their catchment area. The pioneering efforts of Casteñada in Guatemala [
14], Carpentier in Vietnam [
15], or Strada in Sudan [
16] aid as inspiring models for offering cardiac surgery to populations in underserved areas. While the burden of cardiovascular disease varies significantly among these countries, they share scarcity of resources (financial and human), underdeveloped infrastructure, lack of accurate cost-effectiveness studies that can guide policy makers on optimal allocation of funds and, above all, huge unmet clinical demands.
3.2. Role of Cardiosurgery Society
In 2018, the Society of Thoracic Surgeons (STS), the American Association for Thoracic Surgery (AATS), the European Association for Cardio-Thoracic Surgery (EACTS), the Asian Society Cardiovascular and Thoracic Surgery (ASCVTS), the Pan -African Society of Cardiac and Thoracic Surgeons (PASCaTS) and the World Heart Federation have collectively established the Cardiac Surgery Intersociety Alliance (CSIA).
With the understanding that surgery is, and will remain, an integral part of the management of rheumatic heart disease, as already described in previous chapters, the Cape Town Declaration on Access to Cardiac Surgery in the Developing World, was adopted, signed and published in all the main cardiac surgery journals. The Cardiac Surgery Intersociety Alliance (CSIA) was created following the guidelines of the first objective of the Cape Town Declaration to be the operational arm of that project. The CSIA is made up of delegates from the major cardio-thoracic societies, the World Heart Federation and a representative from the pharmaceutical industry. This association is responsible for evaluating, approving, mentioning and monitoring potential centres in less developed countries to increase access to cardiac surgery; it is also delegated to organize the training of suppliers in these sites.
To achieve this goal, a list of criteria for selecting the CSIA intervention program was created. This list has been reviewed and ratified by the leadership of all societies whose members make up the CSIA: these principles embody the central message of the Cape Town Declaration. The list of criteria was created with the aim of being collaborative with the sites that are chosen, so that their commitment, involvement, transparency and sustainability are guaranteed. Each chosen centre should ideally be based on the 5 pillars of the supported projects, which are:
“Pilot” Centre
Local guarantor
Sponsor
Training site
Academic Partner
The initial plan is to select 2-3 pilot sites to launch the project. Once success and feasibility are demonstrated, CSIA will expand this project to other locations. The purpose of this association is to search for sites that are dedicated and determined to establish long-lasting and sustainable partnership relationships. The goal of the CSIA is primarily to enable surgeons and cardiac centres in developing countries to increase their long-term clinical and academic capacity through professional and financial support.
However, many other opportunities arise:
1.1 Workforce mapping: Substantial disparities exist in the availability and distribution of cardiac surgery providers around the world.
Low-income countries have only 0.04 adult and 0.07 paediatric cardiac surgeons per million inhabitants, compared to high-income countries, which have 7.15 adult and 9.51 paediatric cardiac surgeons per million inhabitants.
In other words, high-income countries have 179 times more adult cardiac surgeons and 134 times more paediatric cardiac surgeons than low-income countries. Improving the accuracy of this data and monitoring it periodically is necessary to ensure that societies and countries can adequately develop training programs and fill key gaps in the availability of surgical workers.
2.1 Gender equity: In high-income countries, relatively few female cardiac surgeons practice this discipline, making cardiothoracic surgery one of the most disproportionate subspecialties of medicine in this respect. For example, in the United States, only 3% of credentialed cardiothoracic surgeons are women (17). These disparities are even more evident within less developed countries, as non-cardiac surgical subspecialties seem to indicate (18).
Women working in cardiac surgery are forced to face much more onerous barriers than their male colleagues, both in terms of the wage gap, unconscious bias, academic performance and advancement, and family planning (19). Cardiac societies can and should take the lead in better understanding and reducing such sex-based barriers, thus paving the way towards gender equity.
3.1 Training programs: Centralization and high costs of cardiac surgery training programs create significant barriers to training surgical personnel in low-income countries.
While high-income countries already prove “frugal” in training cardiac surgeons due to the importance of hands-on education time and a relatively low (compared to other specialties) need for surgeons per million population, low-income countries they are often even completely devoid of training programs.
Most aspiring heart surgeons in sub-Saharan Africa, for example, are forced to leave their country because training programs in the region only exist in North Africa, South Africa, Ghana and Kenya (most often with only one or two places available each year for foreign apprentices). Moving to North America, Europe or Australia is generally difficult, due to language barriers, bureaucratic regulations (diplomatic visas), or accreditation requirements at foreign academies. The development of more regional training programs, such as those promoted by the College of Surgeons of Eastern, Central, and Southern Africa (COSECSA) and the West African College of Surgeons (WACS) for non-cardiac surgical sub-specialties, will allow for more large and standardized population of qualified cardiac surgeons in the region and will mitigate the potential migration of professionalized staff.
3.3. Rheumatic Disease
Rheumatic heart disease (RHD) is estimated to affect more than 33,000,000 individuals worldwide, with a prevalence equal to that of the human immunodeficiency virus. Rheumatic disease is a chronic autoimmune disease that occurs as a result of a streptococcal infection of the throat or skin that can affect the heart, with its primary effects of scarring, fibrosis, and calcification of the heart valves. It is a leading cause of heart failure in the underdeveloped world. Rheumatic disease is the most common cause of cardiovascular disease among young people and is a major cause of cardiovascular mortality and morbidity, causing approximately 300,000 deaths per year. The international community has previously formally committed itself to improving and reducing the burden of rheumatic disease through a focus on primary and secondary prevention. Between 1990 and 2015, the estimated number of deaths decreased from 347,500 to 319,400 (8.1% decrease). Nonetheless, the burden of rheumatic disease remains high; there are estimated to be 300,000 deaths per year and the need for 200 operations for million populations in low-income countries, where it is estimated that more than more than 6 billion individuals have little or no access to cardiac surgery. In light of this pressing situation, the Cape Town Declaration (CTD) has been drafted, approved and signed by all major cardiac surgery societies, as well as key company representatives, signalling the commitment of the global cardiac surgery and cardiology communities, as well as the medical industry and relevant government bodies, to improve access to cardiac surgery care around the world. This project proposes overcoming the inaccessibility of cardiac surgery in rural populations, the unavailability of valve devices for replacement and the difficulties in administering anticoagulants.
At the 97th meeting of the American Association for Thoracic Surgery in Boston, key leaders from major international cardiac surgery societies, along with other global stakeholders, gathered to focus on developing a dialogue on the topic of increasing access to cardiac surgery in developing countries. This convening was timed to address the large disparity in access to cardiac surgery that exists between the developed and developing world. The deliberations of the assembled participants were summarized and published in the “Cape Town Declaration on Access to Cardiac Surgery in the Developing World.” This document was adopted by major international cardiac surgery societies and published simultaneously in nine international journals. The mission of this document is to urge all relevant entities within the international cardiac surgery, industry and government sectors to commit to developing and implementing an effective strategy to address rheumatic heart disease in the developing world through greater access to cardiac surgery.
The non-obvious objective was a "build local capacity", while also encouraging a concerted effort and continuous dialogue between developing and high-income countries. This objective can be achieved through the formation of international working groups (coalition) composed of people from cardiac surgery societies and representatives of industry, cardiology and government in order to evaluate and support the development of cardiac surgical care in low-risk countries and middle income. The embodiment of this purpose enshrined in the Cape Town Declaration is the CSIA. The first step was the approval of cardiac surgery centres in order to enhance their development capacity. Additionally, the CSIA established and published the criteria by which potential clinical sites would be evaluated for possible approval.
Ultimately, interdisciplinary and cross-sector collaborations among all stakeholders will be needed to develop effective regionalization models for training LDC cardiac teams and to develop low-cost technologies to improve training and care delivery in LDCs. developed. In a field as complex and expensive as cardiac surgery, in order to optimize results the need to reduce costs and increase the volume of procedures (per supplier and per center) will be increasingly strong (20).
Severe inequities in the provision of cardiac care persist around the world. In an era when North American and European practitioners continue the search for the most innovative technologies to improve patient outcomes, less developed countries struggle to provide conventional open-heart surgery to those who need it at the rates needed.
As professional societies, healthcare providers, researchers and advocates, we have a moral imperative to rid ourselves of unacceptable inequities within cardiac surgery worldwide in the name of global health. Six billion people around the world do not have access to safe, timely and affordable heart surgery care when needed, and their fate should not be determined by the country or prosperity into which they were born.