Consider these statistics —global estimates peg one in every 120 children is born with a heart defect. With India's population in excess of 1.2 billion, and a birth rate of 19.3/1000, it can be estimated that nearly 2,20,000 children are born annually with heart defects. This translates into the sobering fact that India has the largest burden of congenital heart defects in the world. It is also estimated that over 90 per cent of children born with heart defects in the country do not receive timely attention, leading to premature death or lifelong disability. Universal heart coverage for children with heart disease in India could help change that.
Until recently, heart disease in children was not perceived as a priority in many parts of the country, mainly because children were dying from other conditions relatively easier to prevent. However, improvements in basic healthcare changed that. The Indian Academy of Pediatrics has identified birth defects of the heart as a major contributor to infant deaths in the state of Kerala. A similar situation is emerging in other southern states, Maharashtra, Punjab, and Himachal Pradesh.
Caring for children requires sophisticated equipment and a team of highly qualified health professionals that include paediatric cardiologists and surgeons and specially trained nurses. The current comprehensive paediatric heart programmes are insufficient to take care of the massive national burden. Plus, most of these are in the private sector, with a limited capacity to subsidise costs of care. Adding to the conundrum, most medical insurance providers do not cover congenital heart defects. State governments such as Maharashtra, Andhra Pradesh, Chhattisgarh, and Gujarat have introduced schemes for children with heart disease. However, because these schemes are typically for school children, the most vulnerable group — newborns and infants — are often left out.
The massive burden of congenital heart disease can only be tackled through the efforts of all stakeholders. Hospitals with a paediatric heart programme need to find innovative ways to deliver high quality services at affordable costs. The Rashtriya Bal Swasthya Karyakram scheme introduced by the Ministry of Health and Family Welfare in 2013 seeks to screen and treat over 270 million children from 0 to 18 years for four Ds — Defects at birth, Diseases, Deficiencies, and Development delays, including disabilities. So far about 40 crore children have been screened, and congenital heart disease is found to be the commonest birth defect.
Given the resource constraints; it is unrealistic to expect every child born with heart defect to be covered under government-aided schemes. Further, delays in obtaining assistance of government-sponsored schemes, have unacceptable consequences for these children.
There are a few NGOs that are specifically seeking to assist families of children born with heart defects. Prominent examples include the Genesis Foundation (Save Little Hearts) and the Rotary (Gift of Life). Credible NGOs have the potential of harnessing the resources of private donors and Corporate Social Responsibility (CSR) funds. However, this will require a sustained campaign to educate individuals as well as companies who have the means to contribute to charity. The overwhelming joy of seeing happy faces of family of a growing child, who would have otherwise died from congenital heart disease, is an unforgettable experience. And we need everyone to join this fight.
The author, Dr Krishna Kumar, is a Clinical Professor and Head, Paediatric Cardiology, Amrita Institute of Medical Sciences and Research Centre, Kochi
