Universal heart coverage for children with heart disease in India

INTRODUCTION On August 7, 2004 hundreds of children, suffering from heart problems, along with their parents arrived at Ambedkar Bhavan at Lower Tank Bund in Hyderabad on Friday, following an assurance from a social activist that he would seek the help of the Chief Minister, Y. S. Rajasekhara Reddy, and ensure that all children got free treatment. A 12-year-old boy with congenital heart defect (CHD) who attended the rally died moments before the rally was to be taken out. This sparked a widespread public outrage in the state.[1] A week later, the Chief Minister of the state, Y. S. Rajasekhara Reddy publically expressed a desire to cover all families below the poverty line under the proposed universal health insurance scheme with lowest possible premium. He specifically mentioned that the scheme would provide for surgeries to children suffering from heart ailments.[2] It is widely acknowledged that the best-known state sponsored public insurance program in India, the Aarogyasri Scheme, was triggered by this particular event. The Aarogyasri Scheme spelt out a strong mandate to cover the health needs of the poorest. Notwithstanding its shortcomings the Aarogyasri Scheme has become a model of universal health coverage for many other states in India and perhaps for the nation as a whole.[3] Universal heart coverage (UHC) can be defined as the existence of a legal mandate for universal access to health services and evidence that suggests the vast majority of the population has meaningful access.[4] The ability of a country to provide universal health coverage for all its citizens is a powerful indicator of its development. India ranks among the lowest in the world when it comes to public health spending and among the highest for out of pocket health spending (172 of 190). This is reflected in key health indices that are sensitive to the quality of primary care such as infant and maternal mortality. Today, India ranks lower than Nepal, Bangladesh and Botswana in infant mortality.[5] Starting in 2005 with the establishment of the National Rural Health Mission (NRHM) there has been an effort by the government to improve health coverage in India. In January 2015, the Indian Government released the National Health Policy (NHP). The NHP prominently includes in its goal “universal access to good quality health care services without anyone having to face financial hardship as a consequence.”[6] More recently, the Rashtriya Bal Swasthya Karyakram (RBSK) scheme was announced specifically for children in India. This is a new initiative aimed at screening over 270 million children from 0 to 18 years for four Ds — Defects at birth, Diseases, Deficiencies and Development delays, including disabilities. It is stated on the first page of the operational guideline that children diagnosed with illnesses shall receive the follow-up, including surgeries at tertiary level, free of cost under NRHM. CHDs and rheumatic heart disease (RHD) figure prominently in the list of conditions included for universal coverage under RBSK scheme.[7] Comprehensive pediatric heart care that seeks to address all forms of pediatric heart disease can be resource intensive. Only the most advanced countries with robust health systems and the high gross domestic product can provide care for all cardiac conditions that affect children. Even in these nations, it is quite challenging to provide comprehensive care for every single child with heart disease regardless of complexity. In most low and middle-income nations, including India, only a small fraction of children with heart disease can expect to receive comprehensive care in today's times.[8] The purpose of this editorial is to explore how pediatric heart care can be included in a national effort towards universal health coverage. I will start by summarizing the situation with pediatric heart care in the country and list the specific challenges when it comes to attempting to provide coverage for every single child with heart disease in India. This will be followed by an attempt to draft a roadmap for inclusion of pediatric heart care in the universal health coverage agenda. THE BURDEN OF PEDIATRIC HEART DISEASE The burden of pediatric heart disease in India is likely to be the largest among all nations in the world simply because of the fact that there are more children born in India than anywhere else. Congenital heart disease Two recent surveys at birth have provided the basis of estimating the burden of congenital heart disease (CHD) in India.[910] Using the larger and more recently published study, it can be estimated that approximately 100,000 babies are born each year with “major” and “critical” CHD. These CHDs include a list of condition that need to be addressed early, mostly within the 1st year of life. Recognizing the fact that majority of those born with CHD do not receive timely treatment, the overall burden of children and adults with unoperated CHD is likely to be considerable in India. Rheumatic heart disease The most recent nationwide surveys under the Jaivigyan Mission Mode (JVM) Project provide estimates of ∼1/1000 of clinical RHD.[1112] Because the JVM project did not include the least developed parts of the country the burden is likely to be underestimated. Even so, the burden of RHD in India is likely to be at least 2 million and a substantial proportion of the affected individuals are children and adolescents.[12] Other pediatric heart disease such as idiopathic pulmonary hypertension, Kawasaki disease, myocarditis and cardiomyopathy, rhythm disorders and, Takayasu arteritis, are all well characterized in the Indian context. They all need specialized attention, ideally in pediatric heart programs. Absolute numbers are likely to be substantial given the Nations Population and age distribution and perhaps beyond the capacity of existing pediatric heart programs. Lifestyle related conditions such as hypertension and childhood obesity are on a rapid rise in urban populations.[1314] Preventive programs need to be instituted on a massive scale to mitigate the ongoing epidemic of adult cardiovascular disease that has its origins in adverse childhood lifestyles. AVAILABLE RESOURCES FOR PEDIATRIC HEART CARE Given the fact that maximum attrition from most forms of CHD happens in the 1st year of life, a meaningful reduction in CHD-related deaths could only be accomplished through correction in the 1st year of life, in most instances through an open-heart operation. Infant and newborn open-heart surgery are among the most resource-intensive endeavors in medicine and outcomes are the exquisitely sensitive quality of services. It is generally recommended that one infant and newborn heart surgery program with the capability of performing 200-500 operations is required for 5-10 million people.[15] This would translate into a requirement of at least a thousand pediatric heart centers for all of India. Perhaps because of the specific challenges, dedicated pediatric cardiac programs have been slow to develop in India.[8] As of 2015 it can be estimated that there are less than 50 centers in India with the capability of infant and newborn open-heart surgery and a minimum annual caseload of 200 operations. The majority of these are a part of “for-profit institutions” and fewer than 10 of these are in the government sector. While the shortfall in an actual number of centers is in excess of 900, an equally important consideration is the distribution of pediatric heart programs. Over 90% of the pediatric heart programs are located in the western half of the country (West of the Kanpur-Chennai line). Many large states have no pediatric heart program. There are no programs for the entire northeastern region [Figure 1].Figure 1: Map of India showing distribution of pediatric heart programs (marked in a red asterisk), note the paucity of programs to the east of the Kanpur-Chennai lineIt is important to recognize that pediatric heart programs need to develop as a part of a large health care ecosystem rather than as isolated entities. Pediatric heart care, particularly for infant and newborns, are effective if they are carefully integrated into an organized and mature referral network of primary and secondary level pediatric caregivers with effective referral and transportation systems.[15] Clustering of many programs in metros would not allow for efficiency and would foster unhealthy competition. Unfortunately, this is exactly what seems to have happened. Most programs in the western half of India are clustered in and around large metropolitan cities. They largely cater to relatively affluent sections of the society resulting a rather ridiculous situation of competition among programs for patients in the face of a massive shortfall in overall coverage. While the costs of care are beyond the reach of many Indian families, these centers have become a destination for an increasing number of children from other countries because they are quite affordable in comparison to high-income nations. These disturbing contradictions are a simple reflection of the fact that health care in India is not organized in accordance with societal needs. Very few of the existing pediatric heart centers in India can be considered truly comprehensive by prevailing western standards. Almost all programs are working to full capacity in the face of a shortfall of human and material resources and limitations in infrastructure.[8] Most programs are forced to share resources with busy adult cardiac programs without which they would not be economically viable. The most serious deficiencies are in nursing, intensive care physicians and dedicated pediatric heart surgeons with the capability to perform infant and newborn cardiac surgery.[16] There is also a serious lack of ability to provide timely diagnosis and referral and general awareness of the magnitude of the problem among the primary health care professionals, resulting in late presentation or

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