Chagas disease is a major public health challenge. It affects approximately 6 million people1, mainly in Latin America. Less than 1% of affected individuals receive proper treatment2.
For the first time, the global community is preparing to celebrate April, 14 as the first World Chagas Disease Day. One of the aims is to raise the visibility and public awareness of people with Chagas disease and the resources needed for the prevention, control or elimination of the disease3.
Chagas disease is one of four Novartis global health flagship programs (together with leprosy, malaria and sickle cell disease). Our work in Chagas disease exemplifies our commitment to apply the Novartis Access Principles in our global health work, adopting an integrated end-to-end approach to disease management, leveraging R&D to address unmet needs, improving affordability through novel pricing and business models and strengthening health systems.
João, a Chagas disease patient, lives in Sao Paulo, Brazil. He is struggling every day with the disease that has now worsened to the point that he needs a cardiac transplant.
A holistic approach to managing the disease
Chagas disease starts as a parasitic and can end as a noncommunicable disease; hence, it requires a holistic care model. Healthcare systems have focused on the acute phase to control the vector but it is during the chronic phase that organ damage complications drive morbidity and mortality – leading to cardiac disorders in up to 30% of patients1.
Complementing ongoing efforts to fight the disease
In 2019, we marked our commitment to help fight the disease by joining the Global Chagas Disease Coalition, an alliance to increase awareness and promote access to diagnosis and treatment. Through a collaboration with the World Heart Federation, an end-to-end roadmap was developed to address Chagas disease, with recommendations for policymakers and healthcare professionals.
Dr Andréa Silvestre de Sousa works as a cardiologist and a public health researcher at the Oswaldo Cruz Foundation (Fiocruz) in Brazil. She specializes on the impact of Chagas disease on heart failure.
Across Latin America, we are working with health authorities and stakeholders on healthcare system strengthening initiatives. In Brazil, for instance, we are collaborating with the Oswaldo Cruz Foundation (Fiocruz) on research and education for neglected diseases, including Chagas disease.
Global health physician and photographer Alex Kumar travelled to Brazil, where Chagas disease is endemic, to meet patients and doctors. He saw first-hand the debilitating complications of the disease.
Patients and doctors shared their stories, explaining what it means to live with Chagas disease. We hope these stories will help to break the silence. But more needs to be done.