Why We Advocate for the Health and Rights of Children
Children's HeartLink is a leading global champion for the health and rights of children with heart disease. We advocate with decision-makers to assure ALL children have access to high-quality and affordable pediatric cardiac care. Our efforts focus on CREATING CHANGE in the four priority areas: increasing the pediatric cardiac capacity; building the pediatric cardiac workforce; closing the data gap, and financing pediatric cardiac care.
DRIVING POLICY CHANGE IN HEART CARE
We educate decision-makers and other key stakeholders in the countries where we are active, as well as globally—to inform government priorities, investments, strategies and policies to move the needle for children in need of heart care.
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Our Work with Global Health Care Leaders
- In partnership with Global ARCH, we developed and supported the Declaration of Rights of Individuals Affected by Childhood-Onset Heart Disease.
- In partnership with the Newborn Foundation and our partners in India, we developed recommendations for newborn screening for CHD in low- and middle-income countries.
- Our engagement with governments in India and Malaysia helped develop the infrastructure for pediatric cardiac care beyond our partner hospitals.
- Children’s HeartLink was one of the partners that developed the innovative program for congenital heart disease that contributed to significant reductions in infant deaths in the Indian state of Kerala. Our work with its government led to a policy change and made newborn screening mandatory in 2020.
- Congenital Heart Disease Fact Sheet
Those looking to drive advocacy efforts for congenital heart disease and rheumatic heart disease in their own communities can reference the Advocacy Toolkit, created by Children’s HeartLink and Global Arch. Whether you’re a patient and family organizations, nongovernmental organizations (NGOs), civil society groups, professional organizations/societies or individuals this toolkit can be adapted to reflect the situation in your country and region.
INFORMING THE WORLD ABOUT PEDIATRIC CARDIAC CARE
We drive the development and collate the latest data to inform policy for prioritizing the health and rights of children with heart disease. When the data doesn’t exist, we identify partners to generate new evidence. We advocate for pediatric cardiac care policies and lead the efforts to include these policies in best practice recommendations.
Our Work with Data to Support Global Health Care Advocacy
- The Invisible Child: Childhood Heart Disease and the Global Health Agenda describes the burden of heart disease in children, the barriers to improving access to care and examples of locally driven success. This call to action was published in The Lancet and The BMJ .
- Global Burden of Congenital Heart Disease Study published in The Lancet Child & Adolescent Health that provides new and important data to support global advocacy efforts.
- We co-sponsored and participated in the ICHOM Standard Set for Congenital Heart Disease (CHD) working group. The standard set is a list of patient-approved quality measures for CHD, an important step in introducing value-based care to the patient population.
- Global and National Advocacy for Cardiac Surgery—Start with the Children, a chapter in Global Cardiac Surgery Capacity Development in Low- and Middle-Income Countries. It examines the role advocacy can play in increasing access to heart care.
- Children at the Heart of Global Cardiac Surgery: An Advocacy Stakeholder Analysis. Collaborative framework to more effectively advocate for closing gaps and disparities in heart disease in low- and middle-income countries.
COLLABORATING WITH GLOBAL HEALTH ORGANIZATIONS
Children’s HeartLink connects people, ideas and resources to drive solutions. We always look for ways to strengthen our advocacy through effective collaboration and leveraging resources in support of a global health agenda inclusive of the needs of children with heart disease.
We engage with global organizations to encourage and support global advocacy efforts.
Children’s HeartLink is in consultative status with the United Nations Economic and Social Council (ECOSOC). We aim to be recognized as an expert who can actively engage with UN programs, funds and agencies as well as participate in events and activities.
CHILDREN’S HEARTLINK IS A MEMBER OF:
Child Health Task Force
Global Alliance for Rheumatic and Congenital Hearts
Global Initiative for Children’s Surgery (Global Arch)
Global Health Council
Health Workers for All Coalition
NCDI Poverty Network
UHC2030 and the Civil Society Engagement Mechanism
WHO Global Coordination Mechanism on NCDs
WHO Partnership for Maternal, Newborn and Child Health