health
6-Year-Old Boy Has Been Waiting Six Months for His Medication, and His Life Is in Danger
Juan Sebastián Beltrán is a six-year-old child who is going through a delicate health situation that puts his life at risk due to the lack of essential medications that he has not received for more than six months. His case joins the list that patient associations report weekly on the difficulties in accessing treatments for rare and orphan diseases in the country.
TL;DR
- Juan Sebastián Beltrán, a 6-year-old boy with nephropathic cystinosis, has not received essential medications for over six months.
- His mother, Cristina Mora, reports that EPS Famisanar is responsible for the medication shortage, which is worsening his health and potentially damaging his kidneys and eyes.
- Cystinosis nephropatica is a rare orphan disease affecting approximately 25 people in Colombia, characterized by the accumulation of amino acid crystals in organs.
- The required treatment includes daily capsules of cysteamine and specific eye drops, crucial for managing the disease and preventing progressive damage.
- Despite legal actions like petitions and 'tutelas', the family has received only excuses and silence from Famisanar.
- Famisanar has been under intervention by the Superintendence of Health since September 2023, with medication delivery issues being a recurring criticism.
- Patients can report medication shortages for rare diseases to the Superintendence of Health, file 'tutela' actions, or seek support from organizations like Fecoer.