Pediatric cardiac procedures in India: Who bears the cost?

Abstract

The realm of pediatric cardiac care in India presents a poignant paradox. On the one hand, there exists a growing awareness and expertise in treating congenital heart disease (CHD), providing hope for countless families grappling with the diagnosis of CHD in their kids. On the other hand, the financial burden associated with these procedures often threatens to overshadow this hope, leaving families navigating through a maze of uncertainty. The costs associated with diagnosis, surgery, postoperative care, and long-term management of most of the CHDs are substantial, often exceeding the financial capabilities of average Indian families. They are usually forced to make agonizing choices between their financial stability and the life-saving treatment of their children. For many, selling assets, borrowing money, or depleting savings becomes the only viable option, plunging them into a cycle of debt and poverty. Moreover, the impact of this financial burden extends far beyond immediate medical expenses.[1] Families often must contend with additional costs such as travel, accommodation, and loss of income due to prolonged hospital stays. An Indian retrospective study[2] of 644 children admitted for cardiac surgery showed that the median expense for admission and surgery was INR 201,898, almost equal to the annual family income of affected patients. The median loss of person days was 35, and the number of job days was 15. One in two families reported overwhelming to high financial stress during the admission period for surgery. Approximately half of the families borrowed money during the follow-up period after surgery.[2] In our quest to understand the dynamics of funding for pediatric cardiac care in India, we conducted a survey that included 24 pediatric cardiac centers spread across the country [Figure 1]. This survey aimed to delve into various aspects, including the cost of standard procedures, sources of funding, and the number of patients receiving financial aid from different sources. The detailed methodology of the survey and the study pro forma are available in Appendix 1. We included the public and private sectors and charitable hospitals, ensuring a holistic view of pediatric cardiac care financing in the country.Figure 1: Hospitals participating in the surveyCOST OF PEDIATRIC CARDIAC PROCEDURES IN INDIA In our survey, we analyzed the costs incurred by the patients for common interventions and surgeries for CHD, which are presented in Tables 1 and 2, respectively. The cost of pediatric cardiac interventions and surgeries depends on various factors, including the type of procedure, implants/devices used, hospital infrastructure, and geographic location, apart from whether the hospital is private, government-run, or a charity hospital.[3] Even among the private hospitals, the cost varied significantly depending on the infrastructure, level of super specialization, utilization of resources, and type of ward chosen. It is crucial to recognize that the costs mentioned represent the expenses borne by the patient and their families rather than the comprehensive cost of the procedure. In some government hospitals, patients pay only for consumables such as medicines and disposables, and the government subsidizes or covers the costs associated with establishing, staffing, and maintaining a pediatric cardiac unit.Table 1: Cost of interventions for congenital heart disease among various Indian centers*Table 2: Cost of surgeries for congenital heart disease among various Indian centers*PEDIATRIC CARDIAC PROCEDURES IN INDIA – WHO PAYS FOR THEM? In our survey of the 24 hospitals, six were run by the government, where most patients underwent procedures under the various central and state government schemes (60%), and the breakup is presented in Figure 2a. Out-of-pocket spending was the primary source among one-fourth of patients. In our survey, four charity hospitals participated, where most pediatric cardiac procedures were performed under state government schemes (48%) and funding from nongovernmental organizations (NGOs) (35%). The remaining procedures were covered by hospital corporate social responsibility initiatives, the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana (AB-PMJAY), and other government aids.Figure 2: (a) Funding sources for pediatric cardiac procedures in government hospitals (b) Funding sources for pediatric cardiac procedures in private hospitals. JSSK: Janani Shishu Suraksha Karyakram, AB-PMJAY: Ayushman Bharat Pradhan Mantri Jan Arogya Yojana, NGO: Nongovernmental organization, CSR: Corporate social responsibilityIn our survey, 14 pediatric cardiac centers from the private sector participated. Private hospital patients utilize more diverse funding sources than other types of hospitals. Approximately one-third of patients underwent treatment with out-of-pocket expenditure (35%) [Figure 2b]. IMPORTANCE OF THE PROBLEM Every year, about 200,000 children are born with CHD in India.[4] About one-fifth of these children require early intervention or surgery. Only a few government hospitals offer interventional or surgical treatment for CHD.[5] Government-run pediatric cardiac centers often have limited capacity in terms of infrastructure, medical equipment, and staff. This leads to longer waiting times for surgeries and interventions and overcrowding in facilities. Geographical disparities, budget constraints, and quality of care also limit them.[4-6] Indian pediatric cardiac programs have successfully provided life-saving cardiac interventions at a fraction of the cost compared to Western countries, making cardiac care more accessible to children from all socioeconomic backgrounds.[6] For instance, an arterial switch surgery costs as low as USD 1000 in some governmental setups to USD 3600 in most private establishments [Table 2], in contrast to the range of USD 25,000–500,000 in Western nations with a median cost of USD 82,360.[7] However, the mismatch between the per capita income in India and the cost of cardiac procedures underscores the profound economic challenges families face when confronted with pediatric cardiac conditions. While witnessing gradual growth over the years, India’s per capita income remains significantly lower than developed nations. According to the Ministry of Statistics and Programme Implementation, India’s per capita income is less than INR 100,000 in 2023,[8] reflecting the economic realities for a vast population segment. Lack of adequate paying jobs is emerging as the most critical factor for dissatisfaction among newer qualified Indian pediatric cardiologists.[9] Optimization of cost and public funding to make pediatric cardiac services widely accessible are the most critical factors that would enable more centers to be set up across India.[4,10,11] This would not only improve the outcome of children with CHD but also create adequate job opportunities for the next generation of pediatric cardiologists.[10,11] There are limited jobs in the government sector, and the private sector cannot afford to employ many people with high salaries and limited income. Unless there is enough compensation for all the diagnostic and therapeutic procedures, the newer specialty areas cannot be developed, and there will not be trained people in specialties. A global comparison In a review encompassing 193 countries, India falls into Group 2, indicating that pediatric cardiac surgery is available within the country, but accessibility remains a challenge for a significant proportion of children with CHD. As identified, there is a considerable reliance on out-of-pocket spending, reflecting the financial burden on individuals seeking pediatric cardiac care.[12] In contrast, Group 1 countries, which included developed economies such as North America and Europe, have pediatric cardiac services that are available and accessible to all children with CHD. In these countries, financing pediatric cardiac surgeries is often facilitated through insurance schemes or direct government funding, ensuring broader access to essential cardiac care without imposing significant financial constraints on patients and their families.[12] INITIATIVES THAT ARE IMPROVING THE SITUATION IN INDIA Government of India initiatives According to India’s National Health Account estimates for 2019–2020, there has been a notable shift in health-care financing trends in India. The proportion of out-of-pocket health-care expenditure decreased from 62.6% in 2014–2015 to 47.1% in 2019–2020. Conversely, the share of government health expenditure increased from 29% in 2014–2015 to 41.4% in 2019–2020. The government’s budgeted spending on the health sector touched 1.35% in 2019–2020 compared to 1.13% in 2014–2015.[13] Government aid for pediatric cardiac care has also improved. The Government of India, recognizing the importance of addressing CHD, has launched various programs to provide financial assistance and subsidized treatment to economically disadvantaged families. Schemes such as the AB-PMJAY,[14] Janani-Shishu Suraksha Karyakram (JSSK),[15] and Rashtriya Bal Swasthya Karyakram (RBSK)[16] have been instrumental in extending health-care coverage to millions of children and are summarized in Table 3. However, the reach and effectiveness of these schemes still need to be improved. Administrative bottlenecks, inadequate infrastructure, and disparities in implementation often hinder their ability to cater to the entire spectrum of pediatric cardiac care needs.Table 3: Government of India schemes that support pediatric cardiac proceduresThe Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana program: Is it the game-changer? The AB-PMJAY program is the world’s most extensive government-funded health assurance program. It is making rapid strides in improving access to quality secondary and tertiary care for those in need, the bottom 50% of the Indian population. The AB-PMJAY is now widely accepted across 33 states and union territories, except Delhi, Odisha, and West Bengal. The AB-PMJAY scheme encompasses over 1500 health-benefit packages, with around 150 dedicated to cardiac surgeries and interventions.[19] Among cardiothoracic and vascular surgeries, 121 procedures are included, out of which 50 are for CHD. AB-PMJAY covers almost all congenital heart surgeries. However, the scheme does not include a few interventions, such as coarctation stenting and transcatheter valve implantations. The average reimbursements offered for different procedures are summarized in Table 4.Table 4: Package costs under the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana scheme in public tertiary hospitals*[ 20 ]State government programs In India, health is a state subject. Hence, many state governments have launched a few initiatives to enhance CHD screening, diagnosis, and management with somewhat different names [Table 5]. One notable program is “Hridyam,” the flagship initiative in the state of Kerala.[21,22] Under this program, a comprehensive strategy is devised to address CHD, encompassing prenatal screening, pulse oximetry screening for newborns, diagnosis of CHD, establishing a referral system, stabilization and transportation of patients, treatment at designated centers, and posttreatment follow-up. Over 3 years, the implementation of this comprehensive program resulted in a significant reduction in infant mortality rate and mortality attributed explicitly to CHD, with declines of 21% and 41%, respectively.[21]Table 5: Selected state government schemes that support pediatric cardiac proceduresThe Chief Minister’s Comprehensive Health Insurance Scheme in Tamil Nadu offers health insurance coverage for various medical procedures, including congenital heart surgeries.[23] Through the Sishu Saathi[25] scheme in West Bengal, nearly 28,000 children have undergone various procedures over 10 years.[32] Similar initiatives by state governments include the Mahatma Jyoti Rao Phule Jan Arogya Yojana[26] in Maharashtra, the Mukhyamantri Amrutum Yojana[27] in Gujarat, and the Mukhyamantri Chiranjeevi Yojana in Rajasthan.[30] These schemes have made substantial contributions to the care and treatment of Indian children with CHD.[33] Charitable hospitals Charitable trust hospitals are vital in filling India’s pediatric cardiac care gap, particularly for underserved populations. Their commitment to affordable and accessible health-care services reflects a broader commitment to social welfare and health-care equity. Some of the hospitals (e.g. Sathya Sai Hospitals) offer high-quality care at no cost to the patient. However, only a few groups have established hospitals at multiple locations. The critical challenges for these charitable institutions are sourcing finances, long waiting lists, and retaining trained human resources. Despite these shortcomings, some of these institutions are playing a pivotal role in not only treating many children with CHD but also in training the workforce. Privately funded hospitals In the private sector, where a significant proportion of pediatric cardiac procedures are performed, the burden of payment falls squarely on the shoulders of families. Despite the improvement in health insurance coverage in India, the coverage for pediatric cardiac conditions is often limited, with high premiums, sub-limits, and exclusions. Most of these insurances do not cover neonatal and infantile surgeries. The one insurance product covering these procedures warrants enrollment before conception,[10] and the product is poorly advertised and unpopular. Most of the private pediatric cardiology units in India are cost-neutral or loss-making. Yet, the management chains are running them as part of their commitment and social responsibility. However, situations like the COVID-19 pandemic exposed the fragile ecosystem.[34] Charitable foundations and NGOs are crucial in bridging the gap, providing financial assistance, fundraising support, and facilitating access to subsidized or free treatment programs. However, their resources are finite, and the demand for aid consistently outweighs the available support. HOW DO WE IMPROVE THE PRESENT SITUATION IN INDIA? Addressing the deficits in pediatric cardiac care in India requires a multipronged approach that involves various stakeholders, including the government, health-care providers, NGOs, the private sector, and the community. Three significant reforms that can be transformative for managing the cost for Indian children undergoing heart surgery are presented in Figure 3.Figure 3: Reforms in financing mechanisms that can be transformative for Indian children undergoing heart surgery. CHD: Congenital heart disease, AB-PMJAY: Ayushman Bharat Pradhan Mantri Jan Arogya YojanaUniversal coverage under the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana program The eligibility criteria for benefits under AB-PMJAY schemes may exclude certain families, leaving them to fend for themselves. Often, needy patients do not know how to enroll in the AB-PMJAY program. Most hospitals ask for too much documentation for initial treatment, and valuable time is lost, which should be minimized. Hence, we propose that “all children under the age of 5 diagnosed with CHD should receive free treatment at either government or private facilities, irrespective of their financial circumstances or geographic location.” The Pediatric Cardiac Society of India (PCSI) and our leaders in the field should approach the government to implement the same. Various state schemes should be improved to match the AB-PMJAY scheme’s coverage and reimbursement rates. The government must enhance the coverage and scope of other public health schemes, such as the RBSK and JSSK, to include comprehensive coverage for pediatric cardiac procedures. Both state and central governments should actively engage government and private hospitals across India to make this universal coverage a reality. Complete and uniform coverage across states will enable seamless state-to-state transfer of patients for advanced care. Hospital cost optimization The data in Tables 1 and 2 reveal nearly 200%–300% variability in the cost of similar treatment for the same condition in different settings. If every patient is entitled to the same standard of treatment, the cost variation between different hospitals should be within a reasonable band. Hospitals should strive to make the processes more cost-effective. Setting up newer centers in tier 2 and tier 3 hospitals could cut costs and enable patients to travel less to get a tertiary level of pediatric cardiac care. We need to help the government identify areas that need pediatric cardiac services and have centers in those areas. That will help in reducing out-of-pocket expenditure. The cost-effectiveness of various therapies is poorly evaluated in pediatric cardiology, and such studies are rarely reported in India. Resources are limited, and the demand is increasing as more patients with CHD live longer. In the future, one needs to look at cost-effectiveness in relation to functional recovery and optimum utilization of available resources. This is a tricky area. However, funding heart transplantation or a complicated Fontan is not the same as operating an infant with a large ventricular septal defect (VSD). Public money should be spent on the greatest good of a maximum number of people. To begin with, as a community, we may avoid doing off-label procedures like perimembranous VSD device closure for small VSDs under government schemes.[35] Universal acceptance of the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana program A simple comparison of the costs provided by AB-PMJAY [Table 4] and the average cost of the procedures [Tables 1 and 2] shows a large gap, especially between the private-funded hospital charges and the current reimbursement rates. Most private institutions feel that the reimbursement by the government schemes is very low and do not perform procedures under the AB-PMJAY or other government schemes. While these packages are suitable for private hospitals handling low-risk procedures such as atrial septal defect closure and patent ductus arteriosus ligation, they may fall short for complex procedures, the expenses associated with the and postoperative care. Hence, the costs for such procedures should be their and the for postoperative care. The cost of neonatal surgery should also be and made for packages do not by or funding from multiple sources the government that the very of these schemes would be The packages must financing from different especially for situations such as prolonged care, care and For a we need to understand the of the health packages under The charges are cost a and are The AB-PMJAY packages are to cover expenses encompassing human resources, equipment, and [Table Cost of pediatric cardiac procedures in public and private hospitals are now made In a payment was also under but many more additional factors to the cost of a in However, cost data for the various procedures are in India. a few studies and have been to some of the critical including the costs of health-care in India, packages should be included, for the of a procedure, and to set up an patient cost There must be a and it needs to be uniform across all the the cost to the hospital may make more private hospitals to get under the scheme and provide care to those including must do for the costs for some of the infantile and neonatal cardiac surgeries and other Government initiatives a with a of care for CHD, including screening, diagnosis, and The of the scheme in is due to the government’s initiative and with This of initiative is to implement these programs in other states The government should more for pediatric cardiac care, on training programs for health-care and for treatment costs of dedicated pediatric cardiac centers with and a to provide comprehensive care for children with heart conditions. financing mechanisms Health the of health insurance among by premiums, coverage for pediatric cardiac procedures, and reducing out-of-pocket schemes to the needs of families, affordable coverage for pediatric cardiac care. and implement training programs for health-care including pediatric cardiothoracic and to enhance their in and treating pediatric cardiac primary health-care and health with essential and for early and referral of pediatric cardiac to and between the government and private sector to improve access to pediatric cardiac care. This can private sector resources and expertise to and initiatives to additional centers and programs by addressing such as payment and the of subsidized consumables to private hospitals with NGOs and charitable organizations to provide financial assistance, and support services for families affected by pediatric cardiac conditions. reforms mechanisms to the cost of medical procedures, equipment, and to pediatric cardiac care to to quality and in pediatric cardiac centers and health-care facilities. these in a and India can significantly improve the accessibility and of high-quality pediatric cardiac care, the burden on affected families, and enhance the health of children with heart conditions. the of for pediatric cardiac procedures in India financial – it the of ensuring access to life-saving health care for every irrespective of their socioeconomic It is a that and commitment from all of The not in financial but in the to the health and of

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