This study involves a family experiencing the chronic condition for sickle cell anemia of their two teens that needed to require, in some situations, a formal mediation to ensure their right to health when trying to use SUS' services. The objective of this study was to understand how health services have participated in the care of people with sickle cell anemia and their families. It is a qualitative study with data seizure by means of Focal Life Story and operationalized by in-depth interview. It became evidenced that, even when health care policies and programs are in force, professionals must also commit themselves to ensure those people the right to health.
Sickle cell anemia; Chronic disease; Standard of care