Acknowledging a problem is the first step toward finding a solution. Congenital Heart Disease (CHD) is a leading cause of infant and child mortality worldwide, yet it remains unacknowledged by most countries. CHD is the most common type of congenital disability.

This is even though approximately 1.3 million newborn babies worldwide are affected every year from the disease. Apart from the severity of the disease, the factor that has the most to do with survival from CHD is the capability of local healthcare systems. How can such systems exist when the disease itself is not mentioned in the national health policy of most countries?

Missing Disease

According to research published in the August issue of the prominent journal Lancet Child and Adolescent Health, based on cross-sectional policy content analysis of 193 United Nations member states and two observer states, it was found that in the national health priority documents of these countries, CHD largely remains unmentioned. Mention of CHD was completely missing. Across policy documents from 109 countries, CHD was implicitly mentioned in 48 and explicitly referenced in 38.

In low-income and middle-income countries (LMICs), health systems’ capacity and access to congenital cardiac services are especially low, increasing the risk of mortality from CHD. However, despite falling under LMICs, India does formally recognize and explicitly mention CHD in its health policy framework. CHD is mentioned, both implicitly and explicitly, in three important Indian health policy frameworks.

Indian Scenario

The Rashtriya Bal Swasthya Karyakram (RBSK) under the National Health Mission (NHM) screens children aged 0 to 8 for defects at birth, deficiencies, diseases, and developmental delays (4Ds). Congenital heart disease is explicitly mentioned under the defects at birth category, ensuring early detection. India has also established District Early Intervention Centres under NHM. RBSK referrals for specialized pediatric cardiac surgery (including CHD) are facilitated through them. The Ayushman Bharat scheme for National Health Benefit Packages includes facilitation of such pediatric surgeries (including CHD).

However, experts say the situation is more complex than just diagnosis.

“The situation is more complex than just diagnosis. It is suspicion of diagnosis; reaching the right doctor can take quite some time, and with heart disease, that delay can be significant,” says Dr Vikas Kohli, senior paediatric cardiologist working at Indraprastha Apollo in Delhi and founder of Delhi Child Heart Centre.

According to him, manpower is so short that diagnoses are not made in time, and adult cardiologists often make them because paediatric cardiologists are in short supply. Once treated, more than 95% of cases don’t require any intervention.