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.[9
10] 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.[11
12] 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.[13
14] 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 line
It 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, often, untimely death.
While RHD often affects older children and can be managed in centers that do not perform
infant and newborn heart operations, advanced care (surgery and catheter intervention)
for RHD is still quite expensive. Children affected with RHD are typically from marginalized
sections of the society with little or no access to heart programs with reasonable
quality to ensure predictably good outcomes.[12]
THE ROAD AHEAD TOWARDS UNIVERSAL HEALTH COVER FOR PEDIATRIC HEART DISEASE
Infrastructures and building capacity for human resources
The massive shortfall in resources available for pediatric heart care needs to be
understood by all stakeholders, especially policy planners. As long as this shortfall
prevails, announcements on universal coverage (such as the RBSK scheme) can only be
considered to be aspirational statements. It is necessary to develop several hundred
new pediatric programs that are geographically distributed in accordance with regional
needs. It must also be understood that pediatric heart does not surface as a priority
unless infant mortality from readily preventable causes declines. Thus regions with
relatively low infant mortality rate (IMR) (<20) are likely to perceive the need for
pediatric heart centers first.[17] It may be necessary to prioritize these regions
for the development of new pediatric heart programs. In regions with high IMR, a strong
focus pediatric heart care may amount to misplaced public health priorities. The most
important element in building pediatric heart programs is human resources. New centers
will need to be manned by trained pediatric cardiac surgeons, pediatric cardiologists,
anesthesiologists, intensivists, nurses, and perfusion technologists.
It is vital to develop select centers as academic centers of excellence with dedicated
training programs and research facilities. These centers are vital to enable local
capacity building. Traditionally, the responsibility of providing training has been
shouldered by government and selected charitable institutions. In the few government
academic medical institutions in India that take care of children with heart disease
and regularly perform infant and newborn heart surgery, pediatric cardiac surgery,
and pediatric cardiology still largely function as a subsidiary of the respective
adult cardiac service. This arrangement has severely curtailed the growth of the specialty
and has come in the way of the establishment of specialized training programs that
is needed for the care of children with heart disease. A handful of institutions outside
the government sector have initiated training programs in pediatric cardiology. Training
opportunities for pediatric cardiac surgeons are extremely limited, and there are
no dedicated training programs in pediatric cardiac intensive care.
The following action items toward building capacity in pediatric heart care deserve
serious consideration:
There is a need to bring together key stakeholders that should include representatives
of the Pediatric Cardiac Society of India, Medical Council of India and National Board
of Examinations, the Ministry of Health including those involved in the RBSK initiative
to a common forum and discuss the specific modalities towards building capacity in
pediatric heart care in India.
Dedicated Departments of Pediatric Cardiology and Pediatric Cardiac Surgery need to
be established in leading academic medical institutions of the country in the government
sector (such as All India Institute of Medical Sciences, Post Graduate Institute of
Medical Research and Education, Sree Chithra Thirunal Institute of Medical Sciences
and Technology, Sri Jayadeva Institute of Cardiology, and selected medical colleges
and flagship hospitals of the Ministry of Health). Advanced training programs, specifically,
Doctor of Medicine (DM) and Master of Chirurgical (Mch) programs in pediatric cardiology
and pediatric cardiac surgery respectively should be established in these institutions.
Over the next several years there should be a plan to initiate pediatric heart programs
in more and more medical colleges in India in a carefully planned fashion with a view
to build substantial capacity for pediatric heart care in the country.
A mechanism should be created to encourage and nurture private and charitable institutions
with pediatric heart programs to develop training programs for specific categories
of physicians, nursing, and allied professional streams.
Pragmatic models for universal coverage
We recently studied the microeconomics of congenital heart surgery in India at the
Amrita Institute of Medical Sciences in Cochin, Kerala. Baseline and first follow-up
data of 644 consecutive children admitted for CHD surgery was collected prospectively
from parents through questionnaires using a semi-structured interview schedule. Most
families belonged to the upper middle (43.0%) and lower middle (35.7%) socioeconomic
class. Only 3.9% of families had some form of health insurance. The median expense
for the admission and surgery was INR 201898 (interquartile range [IQR]: 163287-266139),
which was 0.93 (IQR: 0.52-1.49) times the annual family income. Median loss of man-days
was 35 (IQR: 24-50), and job-days was 15 (IQR: 11-24). Surgical risk category and
hospital stay duration significantly predicted higher costs. One in two families reported
overwhelming to high financial stress during admission period for surgery. Approximately,
half of the families borrowed money during the follow-up period after surgery. It
is likely that the poorest were not adequately represented in this study.[18]
These results clearly suggest that universal coverage for pediatric heart needs to
be supported by public insurance schemes. Private institutions will need to partner
with the government in providing for UHC in a manner quite similar to the Aarogyasri
model. The total costs for pediatric heart care will be substantial, and it is not
clear how the government will generate the necessary resources? It is not entirely
clear what the annual fund requirement will have to be. If the government undertakes
to pay (as was promised by the minister of health in the RBSK document), will this
be sustainable? In regions where there are serious deficiencies in basic maternal
and child health services, can substantial resource allocation for expensive infant
heart surgery be justified?
There is another key consideration. It is simply not realistic and sustainable for
UHC to cover all forms of pediatric heart disease. This is especially true for congenital
defects. It needs to be understood by all stakeholders that CHD includes an extremely
diverse group of conditions. Some of these require no treatment, some can be fixed
through a single operation, some require many operations, and many have lifelong issues
after the “correction.” The extreme diversity in resource utilization makes it hard
to come up with a simplified recommendation. For example, the 3-stage surgery for
the hypoplastic left heart with considerable long-term uncertainty can consume a lot
of resources whereas a simple cath laboratory procedure can a large duct for good.
Both these are life-saving procedures, but there are major differences in the “return
on investment.”
The likelihood of unanticipated costs is especially high after pediatric heart surgery.
Intensive care is often longer than expected, and this uncertainty will need to be
integrated into the model used to calculate reimbursement for procedures.
It is also necessary to recognize that availability of public insurance with a fixed
reimbursement policy for hospitals may inappropriately shift the focus towards the
simple and relatively benign heart defects. Hospitals may prefer to do more of restrictive
patent arterial ducts, relatively small or moderate atrial septal defects and restrictive
perimembranous ventricular septal defects (VSDs). Some of these defects would often
be left alone in the absence of public insurance. In any case, they would not be a
priority over a relatively expensive situation such as an infant with a large VSD
and pneumonia who stands to gain the most from early corrective surgery.
Given these considerations, how should UHC for CHD be prioritized? The framework for
prioritizing treatment is likely to be complex and will involve a number of considerations.
Two fundamental considerations would dictate how CHD care should be prioritized. Firstly,
how much is the defect likely to impact the child's survival and well-being? Secondly,
what is the likely long-term outcome after initial correction of the defect? Most
would agree that major CHDs that can be corrected through a single operation or catheter
procedure should receive a higher priority over conditions requiring multiple operations
[Figure 2]. Staged single ventricle palliations with the uncertain long-term outcome
(such as heterotaxy and hypoplastic left heart syndrome) should receive the lowest
priority. Figure 2 is an attempt to classify congenital heart operations based on
expected long-term outcomes. For catheter interventions, procedures that do not have
wide acceptance such as the closure of the membranous VSD or a “silent” patent ductus
arteriosus should perhaps receive lower priority. Pulmonary hypertension is a common
association and has a powerful impact on outcomes. It poses a difficult dilemma in
borderline situations. It can be argued that significant elevation of pulmonary vascular
resistance should lower the priority for funding of the procedure because of uncertainties
in long-term outcome.
Figure 2
A simplified classification of congenital heart operations based on expected long-term
outcomes. ALCAPA: Anomalous left coronary artery from pulmonary artery, ASD: Atrial
septal defect, BT shunt: Blalock-Taussig shunt, TOF: Tetralogy of Fallot, VSD: Ventricular
septal defect
Many other considerations are worth deliberating on. They include presence or absence
of genetic conditions that will strongly impact the neurodevelopmental outcome. Co-morbidities
such as blood stream sepsis, lung infection, prematurity, congenital defects involving
other organ systems are all quite common in children with CHD. They have a significant
impact on surgical and neurodevelopmental outcomes and are quite difficult to factor
in.
A model for prioritizing pediatric cardiac care for UHC can be perhaps be developed
through careful consultation with a wide range of stakeholders that should include
pediatric cardiologists, pediatric heart surgeons, general pediatricians, policy planners,
patients and their families. Published and tested risk stratifications systems such
as the Risk Adjustment in Congenital Heart Surgery-I, Aristotle (http://www.aristotleinstitute.org/aboutScore.asp)
and the STAT Mortality Categories may also need to be integrated into the model. It
may be necessary to develop dedicated software given a large number of interrelated
variables.[19
20
21]
Identifying and enlisting centers
Given the sensitivity of outcomes to the quality of care, it is vital that pediatric
heart centers seeking to participate in UHC are carefully selected to ensure that
minimum standards are met. Ideally, outcomes after surgery and catheter interventions
in each institution should be made available in the public domain. Shared registries
between all centers in the country will allow for comparison of results with the benchmarking
with national average and results from North America and Europe.[22] It will also
enable determination of coverage region-wise and for the country as a whole.
Our responsibilities as pediatric cardiac professionals
Pediatric heart professionals in India today are in a unique position to contribute
to the development of the specific disciplines that constitute pediatric heart care.
While we are all perhaps motivated to deliver the very best for the children who reach
us, we should all perhaps consider improving access for the average child with heart
disease in the region we seek to serve as an equally important goal.
Should we not look to try and deliver care in such a way that we benefit the largest
possible proportion of patients in the region? Do we actually go out there into the
community and ask some uncomfortable questions about why children with heart disease
are not getting the care they should be getting?
The huge gulf between resources and disease burden has not surfaced in our collective
consciousness and clearly does not figure enough in our academic deliberations.
We expect the government (policy makers) to figure out ways to address the question
of improving access to care to bridge the gulf and perhaps do not perceive it as our
responsibility. However, we are in a position to influence policy. This requires collective
and responsible advocacy from the members of the Pediatric Cardiac Society of India
(PCSI). The time is right for the PCSI to draft an advocacy statement for the government
with the specific view to improving access for children with heart disease through
a system of universal health coverage.
CONCLUSIONS
Pediatric cardiac care in India has advanced impressively in terms of quality of care
in selected institutions and the number of new centers that have the capability for
the infant and newborn heart surgery. However, the collective capacity for pediatric
heart care in the country falls woefully short of the overall national requirements,
and the existing centers are not distributed in accordance with regional needs. Given
the current challenges, universal coverage for children with heart disease in India
may appear like a distant dream. Nonetheless, this may be the most worthwhile dream
to pursue for the pediatric cardiac fraternity. We can only claim to have truly progressed
when the average child born in India with heart disease has access to comprehensive
pediatric cardiac care.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.