The National Rheumatic Heart Consortium: A nationwide initiative for the control of rheumatic heart disease in India.

ABSTRACT

CHALLENGES OF RHEUMATIC FEVER AND RHEUMATIC HEART DISEASE CONTROL IN INDIA Rheumatic fever (RF) and rheumatic heart disease (RHD) continue to be important public health issues in many low- and middleincome (LAMI) countries affecting children and young people living in conditions of poverty, poor sanitation and overcrowding.1,2 These conditions have been nearly eliminated in the high-income countries, but continue to be common in Africa, Asia and the Pacific.3–5 Over 15 million people around the world suffer from RHD, resulting in approximately a quarter million deaths every year. RHD is the most commonly acquired heart disease found among children and young people in LAMI countries including India.1 There is a perception that the disease burden has declined in parts of India where human development indices have improved.6,7 Though epidemiological data are limited, RHD may have declined in some of the major cities of India, especially in southern India.8 However, in many parts of India with poor human development indices, the high disease burden may not have declined.9,10 There is a paucity of epidemiological data from poorly served rural populations, urban slums and tribal pockets.6 The loss of productivity and costs of care of the large number of currently affected patients with established valvular RHD in India is likely to be formidable. There are vertical disease-specific national programmes for tuberculosis, malaria and HIV infection, but RF and RHD have not received the same attention from policy-makers.11 This has contributed to the ‘neglect’ of RF and RHD in India. Other important reasons include the widespread perception among cardiologists, cardiac surgeons and key opinion leaders in cardiovascular medicine that RF and RHD are no longer important public health issues. These perceptions are formed because the population most affected by RF and RHD is getting increasingly marginalized and may not be in the consciousness of cardiovascular professionals. Most cardiologists and cardiac surgeons practise in tertiary centres in urban areas. It is difficult for the population affected by RHD to seek treatment at these centres. Besides, there are competing priorities for overworked cardiologists and cardiac surgeons that include the coronary artery disease burden which has acquired the status of an epidemic. Paediatric cardiologists and heart surgeons are now looking after an increasing number of children with congenital heart defects that have come to notice as infant mortality has declined in many parts of India.12,13 The consequences of the neglect of RF and RHD are potentially devastating. A good example is the unfortunate situation with penicillin in India. The majority of patients with RHD do not receive adequate secondary penicillin prophylaxis. A number of