health
‘Today we are facing a humanitarian catastrophe and an indolent government’: Fecoer
Diego Fernando Gil, executive director of the Colombian Federation of Rare Diseases (Fecoer) Photo: Fecoer Courtesy
TL;DR
- Over 20,000 claims were filed for rare diseases between January and October 2025, with nearly 60% related to access issues for technologies and medical consultations.
- Nueva EPS has the highest volume of complaints concerning rare diseases, despite not having the largest number of affected patients.
- Fecoer reports a crisis in accessing medications, technologies, and complementary services, noting that even judicialization methods are largely ineffective.
- Patients are now forced to use public denouncement on social media as a primary pressure mechanism due to systemic failures.
- The article criticizes the government, particularly the President, for a 'negationist' stance and for accusing civil society of spreading lies about the crisis.
- Lack of follow-up and reporting on patient numbers and deaths by entities like Nueva EPS exacerbates the crisis.
- Financing for rare diseases, partly through UPC funds, is strained, leading to medication shortages and economic barriers that violate healthcare laws.
- The irreversible damage caused by suspending treatments for rare diseases, coupled with limited therapeutic options and medication availability, highlights the severity of the situation.