Our medical team training to improve care for children with heart disease is not the only work we do to save lives. We also help to strengthen health systems in the countries where we work. India and Malaysia are two countries where we started engaging with health policymakers to advocate on behalf of children with heart disease – and to develop supportive practices in order to remove barriers that make heart care challenging. These barriers include late diagnosis and late referral to heart specialists, patient transportation to hospitals and unaffordable treatment.
Our work with the government of Kerala, the southern-most state in India, led to a policy change regarding newborn screening, which will be mandatory in the state by 2020. Screening newborns for heart disease and other birth defects is critical to ensuring that newborns get diagnosed early and receive the treatment they need.
We began working with the government of Kerala in 2017 in order to improve access to quality care for children with heart disease. We chose Kerala as one of the regions to pilot this work because Children’s HeartLink Center of Excellence Amrita Institute of Medical Sciences is located there and can be used as a referral center and regional training resource for other hospitals.
“This partnership with the government of Kerala has significantly improved the system of prenatal, newborn and childhood screening of congenital heart disease through training and building awareness among primary care providers and specialists working with mothers and children throughout the state,” says Children’s HeartLink Vice President of Global Strategy and Advocacy Bistra Zheleva. “We also capitalized on the strong interest and commitment from the Kerala government to invest in pediatric cardiac services and address mortality from congenital heart defects.”
The decision to institute mandatory newborn screening was announced by Health Minister of Kerala K.K. Shailaja at the First International Child Health Summit in February 2019. Children’s HeartLink co-convened this event.