Orphan diseases in dispute: Nueva EPS defends information management after being questioned about its figures
Sispro registers more than 16,000 patients with orphan diseases affiliated with Nueva EPS. Photo: iStock
TL;DR
- Nueva EPS suspended meetings with patient organizations to discuss orphan diseases.
- Fecoer, a patient federation, highlighted a significant difference between Nueva EPS's reported number of orphan disease patients (5,338) and official Sispro registry figures (over 16,000).
- Nueva EPS cited confidentiality concerns regarding shared information as the reason for suspending the meetings.
- Fecoer argues that information on healthcare coverage is public and questions Nueva EPS's justification for suspending dialogues, especially given an increase in patient deaths.
- Nueva EPS stated the meetings were postponed, not canceled, and will resume after confidentiality agreements are formalized.
- The federation urged Nueva EPS to resume dialogues, present verified figures, and be transparent about their patient management.