“Regale una Vida” a successful social program for underprivileged children with congenital heart disease in a middle-income country

Abstract

: More than 135 million children are born every year worldwide, and about 4 million will die during first month of life. Around 40–70% of those with congenital heart disease will require surgical treatment during the first year of life but many will die without appropriate treatment, especially in low- and middle-income countries (LMIC). Covering the costs is and will always be a big challenge for governments in LMIC, and non-governmental organizations (NGOs) organizing surgical journeys can provide adequate but temporary solutions. The necessity to supply the governmental health coverage was the reason to create a social responsibility program “Regale una vida”. The aim of this article is to present the experience of a successful social program in pediatric cardiac surgery in a middle-income country and compare the surgical results with those covered by the government. Review of the process needed to build and successfully maintain a social program since 1994. Retrospective analysis of the program comparing results with patients supported by the government, from January 2010 through December 2019. More than 50,000 patients have been evaluated, and 3,000 patients and more than 1,000 echos performed in the last 9 years pre-pandemic. About 7% of the evaluated children were found to have some cardiac abnormality, receiving treatment (195/year). Around 70 of those patients/year received cardiac surgery totally covered by the program. RACHS-1 category 2 patients were more frequent in social program group (40% vs. 30%), but Rachs-1 category 4 were less frequent (2.8% vs. 6.2%) (P<0.001). Global mortality rates are lower in the social program (1.4% vs. 3.4%) (P<0.003). 89.7% of the patients are between 1 and 18 years and only 0.1% are neonates. “Regale una vida” is a successful example of a safe, permanent (available 24/7 throughout the year), highly effective, reproducible, and self-sustainable social responsibility program. It includes active search of patients, transfer to a high-quality hospital and surgical, Interventional, or medical treatment, benefiting a big number of congenital heart disease (CHD) patients with low resources. Even during COVID-19 pandemic, with only a small reorganization, social responsibility programs can keep achieving their goal, maintaining excellent and cost-effective results.